I have a question hopefully someone can help. I've had endometriosis since I was 17, done different treatment and been lucky enough to be on my Fourth baby. The problem is with my first three daughters I had a little bit of endo pain first month or two and that was it and it usually didnt start up again until about 6-7months after I had the baby. I'm almost 6mo. now w/ my fourth and I'm having severe pain which feels like the endo pain I get. The really weird thing is since my last daughter (3yrs ago) I've had minimal pain doctor said its because of the last treament I did and the bc I was on, so why if the doctor says its impossible to get endo pain while pregnant am I getting it now during a pregnancy? I hope someone can help.?
here is some info that my sis went through. she has had too many surg for endo for me to remember. it was horribly painful. her first pg wasnt too bad with pain. after the birth of her dd she again had horrible pain. she became pg with ds and it was very painful due to the scar tissue. after she had her son (now 11 months) she is on the pill. she skips her sugar pills and goes right into the next pac to prevent her period. she has had nothing more than some mild discomfort and is not having to take pain meds anymore. she said that once she gets her period, it will probably start to come back and have the same issues. i wish you the best, i watched her go through lots of discomfort with her pg.
I also have endo although I am on my first pregnancy...currently 20w. I have been experiencing a lot of pain and the drs told me that it is probably due to scar tissue. Have you had surgery recently for the endo. I have had 2 surgeries in the past year. So maybe just from scar tissue from the endo. I was bummed when this started because I thought pregnancy was supposed to make it better. Hang in there...I know how hard and exhausting it is!
This is not really a comment but more like a Question.
I was diagnose with Moderate endo last year July 2007. I had bad pelvic pain, painful bowel movement, painful urination due to the endo during my period. I actually thought i was going to die. I was on treatment with Primolut n and came of the pills September 2008. My period was lighter the first month with severe pelvic pain. However for this month (October) i realised that the pelvic pain was gone but had mild pain. But i believe the pills have work. I realise however that that lately I have been vomiting(which i hardly do) feeling nauseated, wild mild headaches and cramping. I know that with sinus which i have you also have the same feeling. I took a pregnancy test but it came out negative. I was wondering however if it is possible to have cramps and also be pregnant. If i am i will be thrilled./ So i will go to my doctor visit on Saturday to confirm. Endo is something ongoing we might have to live with but all we can do is Trust God that everything will work out I have been praying constantly for my pain to subside and looked what has happened.
hello i hope someone could help me with my question! I have had severe pelvic pains since i was 10 y/o and when i was 18 my doctor told me i had endometriosis which i have had a total of 6 surgeries and 2 lupron treatments for. I thought everything was good for a while i haven't had any pain since my last surgery 2 years ago but all my doctors told me i would never be able to have a child. I recently found out that i was pregnant and i am 6 weeks now. About a week ago i started to get really bad pains again and i didn't understand why so i went back to the hospital but my doctor said there was nothing he could do till i was 8 weeks i have my appointment at 8 weeks but i am really scared and it is really hard to wait. I was just wondering if anyone else has gone through this or knows anyone that has. Thanks!
Hey there, I am 21, I was diagnosed with Endometriosis after my first child two years ago. My pregnancy with my first daughter wasn't so bad, I was pretty much pain free. Now I am pregnant with my second child, I am going on 7 weeks pregnant. It's terrible...so far my pain seems to be getting increasingly worst with each passing day. It's absolutley unbearable, and I feel like my lower back is just going to give out on me. The endometiosis has always given me horrible cramping all the time, and terrible lower back pain. I was taking Norco before I was pregnant, every day because of this pain. I am still taking my medication...and my pain is getting worst...I am trying to slowly reduce how much I am taking so that I don't have to take it anymore at all at least two months time before I am due. It's rough. I can tell you right now that I am miserable always from this pain. I am having a full hysterectomy after I have this baby...I am done leading a life of pain and misery. I hate taking the pain killers, I hate needing them so I can walk and get through the day. Good luck to you. There is absolutley nothing to do but wait it out, either the pain will subside, or it will just keep on hurting you until you have a hysterectomy. Endometiosis is my hell.
Hi, I have level 4 endometriosis and have been on Lupron treatment for about 10 years now. During that time I had no pain. I am now 2 months pregnant and a couple of weeks ago I noticed I started having severe pain in my bladder when I would go to the bathroom (just like the old days). I went to my specialist (who's supposed to be one of the leading doctors in this field) and told him bout my pain. After ruling out a bladder infection he said he doubts its endo cuz I'm pregnant. Now I know that was BS after reading all these comments. I"m pretty dissapointed in him and pissed off right now and he'll definitly get an earfull at my next visit. However if anyone's experienced this before, what did you do about the pain? How was the problem solved?
Hi, i have a question about endo. Im 19, and since i stated my period at 11, i've had bad carmps but i noticed at around 14 that the first day and sometimes the second day of my period, i get really really bad rectal pain. I dont normally get back pain or regular stomach cramps and i dont get pain during bowel or urine movement. I do have heavy bleeding around the first 2 days of my period w/small clots. Could i have endometriosis?
Also, if you have endo, could you get heavy implantation bleeding?
Just 1 more question lol, could you get heavy bleeding withdrawal bleeding when coming off the bc pill if you have endo?
I feel for you.
I have been diagnosed with endometriosis last year 2008 while having surgery to remove cysts from both my ovaries as well as a fibroid.
I just found out I'm 4 weeks pregnant and like you, my endo pain is getting worst a little bit everyday. Endo is Hell there's no other words.
In my case, it is my second trip. I have a 3 year old daughter. My 1st pregnancy was a real nightmare with constant pain and countless sleepless nights. I had to stop working and ended up on bed rest for the entire pregnancy. The pain was so bad at times I felt like dying. I went 3 times to the ER where they gave me some morphine. It felt nice for a couple of hours but then the pain always came back.
This second pregnancy was not scheduled. I was experiencing side effects from the bc and decided to take a break. I was fine until this week. The torture is back on and I hate myself for hoping that it would not...for believing that "every pregnancies are different".
I use a heating pad and Tylenol but I know Tylenol is simply not strong enough. I'm miserable and I feel stuck. I try not to consider abortion as an option. I'll just have to endure this hell for another 37 weeks or so.
GOOOD HELP ME.
Anyone recommend a diet or anything else that would help alleviate some of that ugly pain??
Thank you in advance for any advise.
Positive note: when I was pregnant with my daughter, I was told many times that she had a very strong heartbeat. The only thing that kept me going. She is beautiful and healthy. Is it worth it? Of course it is...if you're ready to pay the price.
I found out the same way u did about my endo, I'm on my second pregnancy. my first pregnancy was not pretty!!!! I was in and out of the hospital with overian cysts! but never expericed pain like I have now!!! Im 15 weeks pregnant, now off of work cause I cant stand for more then a half hour.. but the pain will not go away!! even as I'm telling u this I have pain and need to stand for 5min and then sit for 5min.. arg ... anyway I feel that what the DR think is def wrong all these women have proven it!!! And we are the ones living this horrible nightmare!!!! this is going to be my last pregnancy!!! getting the big operation!!! as for the pain well they told me to take Tylenol.. Mmm sorry not working :( other then that I feel that we should be aloud to voice are opinions!!! the Dr need to look in to this a little more obviously... Sorry if this seems mean but we are the ones suffering and in pain!!!! Good luck too all of you lady's.... my hats off to every women living with this.....
ladies stay positive!!!! me too i suffer from endo and also pcos, i found out i had endo when i had a laparoscopy in july 08,my bowels stuck to my womb, all my organs stuck together, no wonder,,,, after suffering from pains, infertility and so many other symptoms for so many years, i have a 10 year old, but could not get preg since??? (with my new partner)the doc told me after my surgery when u get preg u will be fine, but....get preg??? was that a joke i had been trying again for another baby for years, well it was keep trying or just take drugs that would not get me preg, so i kept trying, few months ago sudenly my partner gets told he has sperm problems too, just to make things worse, we went for a few acupuncture sessions and am now preg, but the PAINNNNNN oh my,,,,,,,, am happy i finnaly got preg, and i am greatful and trying to love every minute, its a blessing at the end of the day, but its hard not to get moody and stressed at times when you are in pain, specially after thinking for such a long time (get preg no more pain) thats what makes it hard for me, i had hope but i stil try to keep my faith going and keep tellin myself it will get better,,,,,,,,,,,,,,,??????good luck i know how you feel!!! be open about your feeling with people around you and try to make them understand and let them know what you need from them to make you feel better, and know.....u aint alone in this,,,,,,,stef from spain,,,
A hysterectomy is not a cure, either! The endometriosis can still grow back! It is a treatment like any other endo surgery. It has been shown to keep symptoms away for a long time, and slow regrowth, but it does not necessarily rid you of the disease forever. As far as endo pain in pregnancy, I have just gotten pregnant, and had heard that there should be a remission in symptoms during pregnancy and bought it, until I began having pain. The more I thought about it, the more it made sense... if everything is tied together, then when the uterus grows and everything moves, why WOULDN'T it hurt? I can't believe that doctors familiar with endo can't see the simple logic there. I haven't been to my doc, yet, but I will be talking to her about it.
i have a similar story. I was was diagnosed with endo at 33 after having pain (right side only) not just during my period, but on and off during my whole cycle. I was scheduled for a lap, and low and behold, I ended up pregnant. I am thrilled because I wasn't sure that was even possible. I am 5 1/2 weeks in and I am experiencing the same endo pain I had but more severe. This is not only reallllly uncomfortable, but worse than the pain- its making so paranoid that something is wrong or will go wrong. Its good to find this site and know that I am not alone.
You've NO IDEA (I'm sure you do!) how happy I am to have found this site!
I finally diagnosed with endo in 1998, started my periods at age 11, have had 8 surgeries and told by too many docs to count that the ONLYway I could conceive would be via fertility.
Sooooooo fast forward to Jan of 2010 and low and behold I am pregnant! (21 1/2 weeks)
Miracle since I have no right ovary or tube and I have also been diagnosed with adenomyosis.
However, I too was under the delusion that getting pregnant would help or make my pain better - and it kind of did during month 3-4 but uterine pain has returned with a vengance.
I have been under the care of a wonderful pain clinic for over 4 years to treat both the endo/adeno (front) and back problems. I also have migraines (since age 18 - I'm 39), etc.
I did the Lupron hell in 2001 for 3 months and have never fully recovered (joint pain, etc)
My new OB (I moved to TN last year but still go to same pain clinic in GA
I would suggest to all of you, pregnant or not, with endometriosis to try a natural progesterone cream called Pro-Gest by Emerita. Endometriosis is an estrogen-dominant condition. Progesterone helps to balance out the effects of estrogen and also supports pregnancy. I just started using the cream last week. I apply 1/4 to 1/2 teaspoonful 2 to 3 times a day on my lower abdomen, and it really works to minimize the pain in that area. Unfortunately I also get really bad lower back pain as well. For that I use prescription strength diclofenac 10% topical gel rub and heat packs. You can order the Pro-Gest cream from Amazon.com. Good luck!
Hi I was diagnosed with severe endometriosis in 2001, in Australia there doesnt seem to be the grading numbers but I think severe is probably 4. I then had breast cancer in 2006 aged 34 and recommend all women get an annual mammogram because a study in 2007 in Europe identified a link in increase of breast cancer and other cancers in women with an endometriosis diagnosis - dont wait for ignorant doctors as they wont get off the fence yet unfortunately. I've had IVF and last week had a frozen embryo transfer and am hoping to be pregnant after 9 yrs of trying! I'm already noticing the same old period pain feelings and sensations and yes Drs over here are the same..try not to acknowledge endo until you're almost dead with it and spin the same old garb about how usually pregnancy will "cure" endo, even though every forum I read shows otherwise. I've taken the approach now of educating Drs and telling them how it is and backing it up with what other women are saying and experiencing ..this is where they tell you "don't look at the internet"..well we wouldnt have to if they told us the truth.. :) There are plenty of women suffering now to have stacks of research and evidence based practice across the world.. so dont let any of them reduce you to feeling like you're the exception to the rule or slightly wacko.
Thank you for your comments as I'm going to go into this pregnancy believing despite the pain and endo sensations and wont give up hoping..everyone's miracle comes one day, I believe, and its places like these forums of honesty and support that help to birth them (pardon the pun ;). Love and best wishes to you all, J
I am 22 and have had endometriosis for almost 2 years. I am 21 1/2 weeks preg. with my second child and the pain has been coming back! i have been trying to ignore it, and tell myself that it cant be my endo. but I cannot ignore it anymore. it makes me want to cry. and my Fiance is in the airforce, so he is in texas, he is very worried about me, so i am afraid to tell him that the pain has returned, but we do not keep anything from each other! I don't know what to do, and i feel so alone! I can't stop working because my fiance is gone and we just got a mini van and have a wedding to pay for. plus we are trying to get a bigger house. So i know that the stress doesnt help, but like i said i feel so alone, thank god for websites like this!
So well this is how it all began, I was diagnosed with endo almost a year after i started getting pain each month, the first pain i got was almost exactly a month after my second child, it was 2am it woke me up in a dead sleep i thought my appendix were bursting i had no idea what the hell was going on, it was a pain i have never felt before in my life, honestly i rather be in labor, nothing makes that pain go away and lying down was always the worst position for me, whenever i would get the pain i found out that sitting on the couch as straight as i can would actually help the pain a little bit it helped me have controlled breathing, which was honestly the only thing i can do. Like someone else said i went to the ER and they gave me morphine it helped for a lil but threw my experience there have been no pain pills that have worked at all if anything they make it worse cause they upset my stomach so the pain is worse, they did a cat scan and told me i had a cyst,I understand that cysts can cause pain, but i wasnt buying it, i was on yaz, loved that pill,but it didnt help with the endo, i went to my DR she told me i prolly had endo so i got a laparoscopy and she removed all the fluid and endo lesions. simple and easy recovery surgery i would do it a hundred times if need be. she put me on seasonal which u only get your period 4 times a year. i recently switched pills because that pill made my cervix swell or something like that made sex painful. so she put me on alesse, it was good till i started breaking out, was hungry all the time, and barely ever wanted to have sex, i never took the inactive pills started the next pack right after the last active pill. I have been pain free since that lap a little over a year now it was sept 2nd 2009 now its sept24 2010. iam happy, but i recently went off alesse cause of the side effects and am trying to have another baby my DR keeps telling me that getting pregnant helps with endo, but after reading all these reviews im mortified, i do still want another baby, but i dont know if i could bear that pain all over again. it makes sense that pegnancy would make it worse, cause of the high estrogen levels and its the estrogen that is a considering factor in endo, then why do DRs tell u to get prego especially when they prescribe you a low estrogen pill.The part i hated the most about endo is that i would know when the pain was coming i would feel it lightly throughout the day and i knew that the impending pain was coming and i could do nothing about it, and it always paid its visit at like 10pm my pain was always on my right side it hurt every where but mostly on my right side. I never would sleep that night i would be on the couch sitting there completely still the entire night, nothing worked and no one could help it was a helpless situation. i would throw up, i had diarreah (diarrhea) cause of the pain, and for the next two days after it my stomach was shot. i was always tired everyday iwould be napping, i was bloated, it was horrible, and yes endo is hell, no doubt about it, it ruined my life for a year..
I am 25, I have been diagnosed with endo for 2 1/2 years now I was miserable for 2 straight years I did the lupron and the worst side effects were hot flashes, gaining weight, and headaches...I am finally prego after 3 months at the fertility clinic...right before i went i had a miscarriage which all my endo pain when away before and after....so i was thinking now i was pregnant and it was doing well every thing would be great i am getting cramps and what not lower back pains and i was talking to my doc and he told me it was some of the adhesions from the endo were hurting from everything moving growing and stretching aka round ligament pain but worse because of the endo so hoping that will help some of you know why it still hurts other wise i have been sicker than a dog and so tiered but that is to be expected in the second month...
Hope everyone is well
im finally after over a year of trying, now 16 weeks pregnant, and pretty much am in constant pain from the start this preganancy! i get a lot of overy pains, which seem to be getting worse the further along my pregancy goes. Which really hurts, but i know it will all be worth it. Just got to hang in there, only 24 more week of this to go :s i feel like its just the adhesions being pulled because of the baby/urterus growing, but god it hurts, and we cant take nething! good luck to you all who are going thro this xxx
I have probably had endo since I started menstruating -I had all the symptoms, but also truly terrible doctors, in both NZ and then in the UK and then Canada, where I now live. It took me 18 years since first presentation of symptoms to get a diagnosis - and I saw 5 male gynaecologists who told me my problems were stress related (or in one case, cancer!!) along the way.. idiots. I was finally diagnosed by a female radiologist and a female gp - bless them. By the time i was diagnosed at 33, I was infertile and in terrible pain all the time. I had one lap surgery (another male doctor) at that time, probably pointless since the pain stayed the same -actually the bladder pain worsened; and I was still infertile. I changed surgeons - my new, female surgeon follows the newest research, which suggests the surgeries may just be making us all worse- adding scar tissue, not curing the disease.
That's my story, but I write because I too am now pregnant, thanks to IVF - I am 20 weeks. I've had severe pelvic pain throughout the pregnancy. In fact, I came online today just to see if other endo sufferers were having similar pain problems while pregnant - it sure sounds like it. Right now I feel as if my bladder and bowel are just going to explode, they are so sore! So everyone here has my sympathy. To those of you who've been told endo is "cured" by pregnancy - that's just nonsense. Pregnancy stops menstruation which means there can be no more proliferation of the endometrium in funny places, which is what endo is. But once you menstruate again - well, you're back to endo. Moreover, there's never been a clear link established between the endometrial tissue itself and endo pain. Rather, it seems that chronic pain builds in endo sufferers for complex and poorly understood reasons - the scarring, the hormonal disruptions, the general weirdness of having growths in the wrong places, all of which may cause the brain to go a bit haywire, and send "pain" signals somewhat randomly. That's why you can have all the endo cells burnt or scraped or cut out -and still be just as sore after the operation. That's also why some women have terrible endo - and no pain at all! And of course, that means that pregnancy can't be a "cure" for the pain, because there is no simple cause for the pain. My new and excellent doctors have the best solution: carefully monitored administration of a lot of pain meds, even while pregnant. My advice: if your doctor is an idiot - get a new one. I wish I had known to do so when I was 18.
I am writing this as an observer and a supporter of what my wife has and is going through. Kara was diagnosed with Endo in 1998 and is now 29 years old. As she has gotten older the Endo has gotten worse. My wife had Laparoscopic surgery once in 2003 along with the lupron shots for 8months and it did not help much at all. The Endo is severe and had caused an ovary to stick to her stomach. The Lap surgery released her ovary from the stomach with no damage and also cleared away a lot of the Endo implants and tissue. Her Endo is both inside and outside her uterus and has caused very painful periods that keep her in bed for 7 to 10 days forcing her to crawl to the bathroom if she is home alone. This disease has been a huge factor in her quality of life and has been the cause of severe IBS over the past 10 years. She suffers from sharp stabbing pains in her pelvis(the worst during her period but not limited to just that time) also severe deep lower back pain around her sacrum. She has been on serious pain meds for the pain but even those do not touch the pain sometimes Since Ive know her (10 years) Kara has been on seasonal in order to limit her period to 4 times a year. It is so painful it is hard for me to watch her in such agony I cant imagine what it feels like for her. Today she is 20 weeks pregnant and it took 2 years of trying and a miscarriage around 8 weeks to get to this point. The whole pregnancy has been painful but was tolerable pain without pain meds until week 17. Around week 14 she became confined to the bed only getting up to go the bathroom to use the toilet and keep up her personal hygiene. Its hard for her to walk. At week 17 she landed in the hospital for 3 nites to begin a pain management plan. Again right before her 20th week she ended back in the hospital and thats where I am writing this post. She is devastated that she needs to be on pain meds but their is not another option as the pain is crippling. Even with that pain meds she can barely move around and will be on bed rest till she delivers. Our OB's are great. (after some convincing the pain was Endo) She went through an MRI that came back normal and has been to a chiropractor,a Physical and Massage therapist several times, acupuncturist, spinal specialists and a mental health professionals resulting in little relief. We are thankful and feel blessed she could get pregnant and was able to stay off all meds till week 17. She is now taking 60 mg of ms cotin and is also taking Dilaudid for break through pain. She just started Fentanyl patches 50 micro grams which is the best pain reliever she has tried, a 100 micro grams was too much. We hope this patch will allow her to ease off the other meds as the Ms Cotin does not do much for her we believe. We have rejected the use of methadone patches and suboxone patches because once u start these Meds u can not stop as it is not safe for the baby. We are still hopeful she will be able to stop the meds but reality is setting in that this option will no longer be one. We did not want to take meds and always believed her pregnancy would be a pain free time. We believe the pain management plan we have is the safest it can be given the research out their on these meds during pregnancy. Obviously it is all risky but better than the pain and stress the Endo causes on the baby with out the meds. It is overwhelming sometimes but we truly believe we will have a healthy baby and will make it through this experience. Our last ultrasound showed the baby was on the high side of the weight scale all else was normal. PLEASE DO NOT LET YOU DOCTOR TELL YOU THAT THE PAIN YOU ARE EXPERIENCING DURING YOUR PREGNANCY ISN'T ENDO ESPECIALLY IF THE PAIN YOU ARE EXPERIENCING IS THE SAME PAIN AS WHEN YOU HAVE YOUR PERIOD AS IS MY WIFES. Keep hope, as we did, even when you think it will never happen. When we stopped trying we got pregnant so don't put to much pressure on your self. Anyone is welcome to email us at ***@****. If anyone has thought of a better pain management please let us know. Good luck to u all my thoughts are with all the women and men dealing with this disease with no cure other that a hysterectomy
Thankyou all so much for sharing your stories. i've had grade 4 endo most of my life, several nasty surgeries and 8 miscarriages.
I'm now 7 weeks pregnant.
The pain is horrible, and I'm grumpy because of it but overall, I'm blessed to have this little miracle growing inside me. If the baby wants to pick a fight with my endo adhesions - so be it. This baby means everything to me and will be worth all the pain.
I'm just so pleased to have found this thread, and to know that I'm not the only one with these symptoms. I feel almost normal!
Thankyou all and good luck with your pregnancies =)
i am 28 i have had 4 surgeries, been on lupron treatment even done male hormones for my endometriosis. I started to get really bad pains when i got my period @ 12 but it wasent till i was 17 that it got really bad, 23 ER trips in a month at a point.now i was back in the er n find out im 5 weeks pregnant i was very confused my first pregnancy was beautiful no pain at all until baby was 9 months old... I dont know what to do & im afraid of side effects of all the meds on baby..when is this hell gonna end..at one point the dr made me think i was crazy n making everything up in my head until they got the proof how frustrating
I was diagnosed with endo about three years ago and since then had 3 operations. The pain was manageable for a while after the operations but soon came back. Then I was fell pregnant at "first attempt" and my pregnancy was heaven...no pains at all anywhere,until my daughter was about 7 months then it all returned. Now Im 6 weeks pregnant only and the pains are bad. I was really longing to be pregnant again as when i was pregnant last I was without pain for the first time in about 7 years.
I do hope the pain eases as Im further along but having said that,Im so blessed to be pregnant again and used to the pain that it doesnt really get to me anymore.
The problem is that Igot my own business and its really getting to me.Im so tired all the time and although I got great staff it is stressful and frustrating that I dont have the energy to spend on it as I used to...my daughter is my everything so she will always come first. Now Im just doubting if Im finally having to admit that I CAN NOT go on like this anymore. I have always been a postive person and never let the endo effect my life but now,after 9 years,I think it finally has! Its so depressing :-(
Can I say a massive THANKYOU! to EVERYONE WHO HAS POSTED! I know I am not the topic starter but I seriously felt lost, isolated and confused before finding so many women who have gone or are going through similar experiences as myself.
I too have nasty Endo all over my lower body, I have IBS and gastro problems. I too am pregnant and approx 10 weeks (no scan yet as only just found out!) this will be (if all goes well) my 2nd miracle child although the pain each night and early morning is UNBEARABLE!! I am know on a timed med take, where my alarm wakes me approx an hour before the pain often occurs to try hit it before it strikes. I dont know what is to become of all this, I cant imagine life without a little remedy but hey ho! I`m not alone and thats already helped significantly! Thanks everyone!
p.s If anybody is experiencing gas/wind coinciding with the night pain can you get in touch
I jumped onto the computer today out of desperation. I sit here crying as I type this. I am relieved on one hand to read all of your stories and hear that I am not alone. I had been suffering with endo symptoms since the age of 13 *now 30yrs old and until I switched GYNs last year, I had no idea about endo or that all of my pain and suffering when ovulating, during sex, and my especially painful periods, were all signs of endo. I switched oral contraceptives to Seasonique..one of those monophasic meds which got rid of my symptoms completely! I had total relief from Oct 2010 until May 2011 when we decided we were getting ready to start having children. I did the hysterosalpingogram in June - a test that is very helpful in assessing the extent of scarring but wow, painful! and sure enough, my right tube is scarred and not visible. We tried conceiving right away after as my GYN told me that as I got older, infertility may become more of a problem. We miscarried in July at just 5 weeks pregnant and I am pregnant again now. I have been woken up by terrible endo cramps at 2am (on the dot!!!) for the last three nights.
Last night was the worst..I was up at 1:30, 4:30, and 6:30 and my only relief was getting in the shower with hot water running over me for about 20 min each time. Once the pain subsided, I was able to go back to bed.
I'm only 5weeks pregnant now and I am already sad and tired - emotionally and physically. I don't want anything bad to happen to my baby. I don't want to fear preterm labor.
I work in healthcare as a Nurse Practitioner but I work with kids. The OB GYN world is foreign to me. I am suffering so much already and my poor husband is horrified to see me crying and wailing and throwing up from pain...already!
How do I control this pain at night? I stayed home from work today but know that I cannot go through this every day and leave my patients and my job hanging.
I'm ranting now...I am just so so so desperate for relief..already.
I started Progesterone cream last night and as I have read, should start to or at least hope to, see the symptoms improve in the next few weeks.
Until then, I feel like I'm losing my mind. I have no control over this. Is my baby growing ok? or is it fighting the unstable environment in there? The endo feels like it's winning. and I want to win! I want my baby to thrive. I want to be a mother to my own biological children.
Thanks for listening/reading my story.
~Frustrated and uncomfortable in Queens, NY
I have endo,i had a surgery done in june. Dr. Said it was one of the worse case he had seen. I had my period since september 26.now its nov i still dont see my period,but i have symptoms like my period is coming. I just dont know what to do......
Thankyou soooo much for sharing your story. I do hope you are keeping well and your IVF took. Would you share your transfer outcome?
I have had something like 24 fresh/frozen transfers and 3 laproscopies for endo over a 12 year period. Lost my tubes to 2 ectopic pregnancies in 3 months 10 yrs back. No luck with IVF, though managing endo much better with a combo of Chinese and Western herbs. Am now trying low dose IVF and would love to know if it is possible for this to work for endo patients. Did you have any success?
P.S. To all - I know the pain can be excrutiating, but I wish you all great joy with your new treasures on the way, and I hope the thought of them gets y'all through
i didn't know i had endo until after i gave birth. i began having pain earlier than three months into the pregnancy. i thought that a growing uterus should hurt, so i didn't report it to my ob gyn. eventually the pain got worse, it felt like nails raking up my abdomen. my doctor didn't do anything and put me on 2 rounds of antibiotics for bladder infections even though my labs were negative. so insulting. eventually i went into preterm labor, but thankfully they were able to stop it. i also had a huge fibroid, so they told me that perhaps the tumor was giving me pain. they put me on heavy ibuprofen which made the pain feel like nails raking up my abdomen. strangely, the pain was triggered by me sitting, so i spent 4 months on bedrest. i had a c section, and thought that once the baby was out the pain would decrease. it got worse. i was put on bc. it got worse. i had the fibroid removed. it got worse. finally the obgyn told me that he saw endo during the c section. i have horrible pain, it feels like there are metal hooks throughout my intestines, behind my navel, all over my pelvis. and now i've been diagnosed with pudendal neuropathy. i don't know if the endo messed with the nerve, or if the nerve shoots crazy signals to the adhesions. bc usually make the pain to intolerable. i'm scheduled to try depo lupron, but i'm not looking forward to the ups and downs of menopause. i'm only 33.
I am 26 years old and currently 38weeks pregnant with my first child.
Last year after almost 9 years using 'Progesterone only type contraceptives' I had my implant removed in order to start trying for our first child.
My menstrual cycle returened very quickly after all those years of no periods...and boy did they come back with a debilitating vengeance!!! I knew that this excrushiating pain on (left side of pelvis/back only) was NOT normal...when I saw my gp he said that it was indeed most probebly Endo - especially as every month I was getting UTI symtpoms without the infection around the time of my period. The pains were so bad I would miss days at work and would have dihorrea and vomit due to the pain!
Eventually after about 6months I became pregnant and due to the high progesterone levels from the pregnancy and the absence of my periods I became pain free again...bliss
I'm now at 38w of pregnancy and have started having once again the same old symptoms od Endo...pelvic pain on left side only/lower back ache left side and a feeling of a uti with no infection...
...After doing some research I have found that at the late stages of pregnancy your Progesterone levels begin to drop for the upcoming labour - in fact this is what promtps labour to start and their is an increase in Estrogen also at this time.
I'm terrified I still have another 2-3weeks left in this pain and will it make the labour itself more painful????
As soon as baby is born I intend to return to the implant in order to stop my cycle as I feel this is my only cure of Endo - to simply not have a period at all.
For your information there is a pill form of prosterone called Cerrazette and also the injection every 12 weeks aswell as the implant - all three of these i have been on over the years and all have stopped my cycle and have kept me pain free.
Good luck to you all on your mission to live a life without Endo pain - it really is a horrible debilitating disease that needs more research to improve womens quality of life!
I was diagnose with endometriosis after failing to conceive a child after a year. It was about 10 cm on my left ovary. I recall very painful menstrual cycles at 18 that I fainted and the bc pills that I took the last 10 years masked the symptoms. I delayed scheduling removal of endometriosis for 5 months because I was scared of the surgery but good thing I did because I miraculously got pregnant finally. About the 4 months into pregnancy, my endometriosis started shrinking in size. By the 8th month into pregnancy, the endometriosis had completely disappeared. It's been 2.5 years since I gave birth, the endometriosis are back :( I now have 2 of them, both between 2-3 cm. I'm going back on the pill.
I should add that during pregnancy, I did experience pain but only in the beginning. My dr told me it was all the stretching and enlargement of my uterus making the symptoms of endo worse. 3rd month, I had spotting while on business trip for a week. Baby was fine. I'd been going in to dr biweekly and getting ultrasounds to monitor the endo. Like I said, about 4 months into pregnancy, progesterone must've kicked in and endo started shrinking in size about 1 cm each week. Pregnancy does not cure endo completely, made it go away latter part of pregnancy but endo will come back. It *****...
I have a gas problem and a stage iv endometriosis. Now i am having a hard time to be conceived. I did a lap and my doctor found the bowel stuck to the uterus, and he wants to put me into vif. I read your post and did you get pregnant naturally？Also, did you find a way to get rid of gas, as it's so terrible esp during night, i am so frustrated!
I'm about to go to hospital now I'm 33 weeks into my pregnancy.. I'm worried (and feeling rather despondent) that they will not take me seriously. Everytime my baby girl moves, it feels like someone is pulling on my womb and feels so uncomfortable with mild pain.. And in other area's when she moves or pushes out, it feels like someone is tearing up my insides. I can't bare it anymore :(
So great to find this site. I have always had hideous cycles - started when I was 13 and for the first 6 months, I bled heavily for 9 days ... EVERY 15 DAYS. Until I went on the pill at 18, I had very painful periods every month. Stayed on the pill for 10 years and at 28, I came off it and got pregnant with my son (after 5 months of trying!) but those 5 months I got chronic lower back pain during my periods. No pain during pregnancy with him. After I had him, I went back on the pill for about a year and then what do you know, came off it to try for a second baby and the pain came back. MAJORLY. Finally saw a gynaecologist who said he thinks I have Endo and that either the pill, pregnancy or laparoscopic surgery will reduce it. That was 6 months ago. I also miscarried before I saw that doctor at 4.5weeks too. My Dr said it wasn't endo related ... (God, I hope so!) Then I started bleeding for 5 days mid cycle at ovulation and have put up with lower back pain and chronic cramps MY ENTIRE CYCLE with maybe 2-5 days off per month up until this weekend when I found out I'M PREGNANT AGAIN! Pain disappeared the last 4 days (complete bliss!) but holy hell, it's come back now (5wks preggers) and I feel like my bladder is about to pop or I have a UTI ... and my back pain is so bad. I can't handle this anymore! I tried telling my doctors today that this isn't normal but they just sort of glossed over it. Worst thing is, I"m on tender hooks because this pain is what I had for a few days before I miscarried last year ... I'm so scared I'll miscarry again. Does endo actually cause miscarriages? Or do we just simply have to put up with the pain until we give birth?? I'm trying to stay positive, telling myself that I had this pain with my son, and it will go away like it did with him ... thing is, reading everyone's stories ... it seems that's the case for us endo sufferers until we get onto baby #2 and the pain is mostly constant throughout pregnancy ... I do hope everything goes well for all of us. I'm sure it will but it's so nice to hear everyone's stories ... PS don't forget to update us with how your pregnancies have progressed!!! Thanks a bunch. And if anyone could answer my question, it would be endlessly appreciated. :) Ruth from New Zealand.
Thankyou to everyone who has posted. I'm a 36 yr old aussie, and I was diagnosed with severe endometriosis in February 2012, 5 months ago. My first pelvic symptoms were August 2011, although I had always experienced heavy and painful periods. Bowel symptoms similar to IBS have been a main symptom, deep pelvic pain, low back pain, I had chest pain, palpitations, fainting episodes, and stabbing right ovary pain. Since laproscopy in Feb to remove endometriomas from both ovaries and to detach the right ovary from the pelvic wall, and having been told I have endo through the pouch of douglas that they were unable to access, I have not had any relief from pain. The nature of the pain has changed. It is more constant and I am on 20 mg Oxycontin BD and 5 mg Endone 2-3 x per day as needed. I tried Depo but my body fighted it and I bled heavily for 3 weeks with a 1.5 week break followed by one month of bleeding. I have now been put onto Zolodex. I'm worried about the side-effects and what options I have left. I am a single woman but would love to have a child. I am self-employed. I'm greatful for the info everyone's given in regards to pain during pregnancy because I have been concerned that should I follow this path that I may experience pain during pregnancy, honestly, I don't even know if it's an option but looking at the only option after Zolodex being partial/full hysterectomy, I'm getting pretty down about it. If anyone has any good news out there.. I'd love to hear it...
I have endo stage four also.. I have had 5 surgerys and Lupron. We are trying to get pregnant with our first child but not havening any luck!! I was told i would never have a child i am beging to believe it. can anyone give me any ideas without haven to go to the doctor?? Thamks babygirlm02
I have endo stage four also..Found out when I was 13, I have had 5 surgerys and Lupron. We are trying to get pregnant with our first child but not havening any luck!! I was told i would never have a child i am begining to believe it. Right nowbi feel like iam dieing i am n so much pain.. I go to the local er and they refuse to touch me cuz of endo.. can anyone give me any ideas without haven to go to the doctor?? Thanks babygirlm02
I'm 35 now and am pregnant with my second child. I'm 19 weeks now. I have endo and probably have had it since I was 13, but wasn't diagnosed until I was 27. I needed surgery both times to get pregnant. I've had one miscarriage. What I do know is that yes endo can prevent pregnancy and ovarian cysts during pregnancy can cause miscarriage or problems with the baby. My OB explained to me that they are finding that the adhesions secrete hormones that actually prevent pregnancy.
With my first pregnancy I was on Tylenol 3 until my 3rd trimester. I just moved down south to a more rural area. With both pregnancies I have experienced pelvic pain that is either constant at times and feels like menstrual cramps to being intermittent and having pain with urination, walking, bowel movements, anything that increases intrabdominal pressure. What I'm sick of hearing is that I'm pregnant and it's impossible for me to have endo pain. It's not impossible to get cysts while pregnant and it's not impossible to have left over scar tissue from my last surgery. I miss my old OB cause he adequately treated my pain and he listened to me. This doctor I have now, I'm not sure if it's his office assistants that are just giving me grief or if he's passing the buck onto them. I want pain relief and I want some one to listen to me. I want society to listen to us and instead of being so dismissive to actually start doing some studies on how to take care of this health issue. I'm tired of being treated like a drug addict, I'm tired of being treated like I'm crazy or unstable. Really though the best treatment they say they have for us in the end is castration (hysterectomy), how many men could you say that to and that they would actually follow through with it if it wasn't life or death and even then if they chose not to do it would they be dismissed as easily as women are? I mean really men only get their testicles removed for torsions or testicular cancer. Theoretically their testicles should also come off with prostate cancer, but they don't. Why is it that the doctor's feel like you should be thankful to them for castration? It's like removing one set of difficulties and just replacing it with another. Losing your hormones is serious business and I'm sick of it being treated like it's nothing. Losing your estrogen increases your chances for heart disease and osteoporosis. Not to mention lets face it, anyone who has done Lupron knows what menopause is like and it's not fun. Doctors are doing more and more hysterectomies all the time to treat female dysfunctions and I find that to be sad. I am a healthcare worker and the amount of women I see who've had hysterectomies and don't feel better is also alarming since this is their ultimate fix to endo. Not to mention that if you still have pain after the hysterectomy you're often treated like you have psychological issues. I'm hoping that after this second child I'll get lucky and I will have some relief from my endo. I got a little relief after my first child. This new doctor I have is already pushing hard for a hysterectomy which bothers me seeing as I've only been his patient for a few months. I take Tylenol 3 to get through my cramps monthly along with motrin and right now that's how I'd like to continue. I can deal with that. I don't want to be dismissed cause I don't want the hysterectomy or treated as if my pain isn't that bad because if it was I'd do the hysterectomy. While I may not always feel the best I do not want a hysterectomy cause once it's done there's no going back. And I feel as though maybe the pain will be better (which there is no guarantee), but that I will just inherit a new set of problems. I know how to deal with the old problems I've been doing it for 22 yrs. Good luck to anyone that has this issue. I hope to God my daughter doesn't inherit it from me. This illness has affected my life in so many ways that I'm sure many of you can understand. Sorry this is mostly a rant on how I'm sick of the medical community dismissing women's health issues due to our "instability". And for the record that is such bull because men are the biggest babies! Women deal with pain so much better and with a lot less tears. So many men get queasy just at the sight of the needle when I'm about to poke them for an IV. But we are the unstable ones with low thresholds for pain and prone to more psychological insufficiency, maybe because we have to be so strong for everyone else. Another interesting issue of how women get over looked health wise is heart disease. Now there is a big push for women's heart health, but it has mainly been focused on men for years. They found that when women hit menopause their risk for heart disease rises because the estrogen was protecting them from it for so many years. This push has only come since the late 90's. Women have been living past menopause longer than that. Not trying to be a crazy women's right activist here, just stating some sad facts.
I have been living with type 3 endo since I was 15, now 24 have just found out I'm 5/6 weeks pg which was a shock as dr said it was a slim chance as I also have poly cystic ovaries. I have had all the normal symptoms of pregnacy but keep getting my usually endo pain, Today I woke with very mild brown blood (sorry if tmi) been to the drs and they have referred me to the hospital tomorrow for an early scan as they fear an eptoptic pregnancy because of the pain, on a scale of pain this is no worse than an everyday niggle we all get.... Should I be worried or is there a chance I might be miscarrying? Any info or comments greatly received
Try making bone broth. You take beef, chicken, or lamb bones, rinse, heat in oven on 400, turning every 20 mins until browned, then boil them at a low boil fr 12-24 hours. Skim the scum and fat that rises as it cooks. I think this may have cured my endo. Not sure. Haven't been doing anything else. There's a chance I'm pregnant, but I haven't tested yet. Give it a try! God Bless you
I am actually going through the same thing right now. I have had endometriosis since 1996 and had laprascopic surgery for it in 2000. Doctor said it was a severe case and she "got rid of what she could" without damaging any organs. 12 years later, I just found out I am 5 weeks pregnant and I am having VERY SEVERE menstrual-like pain. It is literally debilitating and I went to the ER because I thought I was having a miscarriage or that I might pass out from the pain. The doctor said it was too early to see anything, even on a transvaginal ultrasound and they sent me home. My HCG levels are going up but this pain is relentless!!!! I have been out of work for a week now because I just can't function. So, you are not alone. I'm amazed to see how many people have actually experienced this and how many doctors seemed puzzled as to what it could be. Hope you are feeling better soon!
I have had endo for almost 15yrs, had many surgeries & treatments but after all this, drs have decided it won't b fixed as even if a tiny bit comes back I can b in hell. Also after a few surgeries u r stuck with scar pain. I wanted a hysterectomy but as I was under 30yrs, they suggested not yet! Plus it prob wouldn't stop my pain. If I did tho it wouldn't have had a chance to spread past my uterus. So now it definitely wouldn't help! My first preg I was in the hospital every week not knowing what was wrong, even tho the endemetriosis was dormant... That's y they say preg helps.... But the pain was from the baby pushing and stretching the bad bits! Some ladies just can't b fixed! It can b controlled with pain relief but if it can't b fixed ur life will change also. I have adjusted my life due to this disease! I cannot do physical things like I used to! I could only do sit down jobs etc, limited housework etc but now I may have made all the adjustments I can & relistically cannot work due to the un-reliability of the pain. Mind u I have kids, going thro another pregnancy now & yes it's painful but the pain will always come & go & it is so worth it! I live mostly a normal life, just most days there is pain, I cannot do a lot, I can look after my kids but some days they will b late to school or will need to prepare their own snack while the pain fades. It also has put major pressure on my partner. He feels useless to help me, worries about me and wonders if I need a full time carer! Also ur partner can make u out to b a burden, even if they don't mean too! And worst part of all of it is most drs have no idea, they r specialised in one part, so the pain team know pain but don't understand endo, pregnancy drs etc can advise on pregnancy but have no idea about the 2 together! Remember, u know ur body best! Ur knowledge will b better than the drs as u specialise in ur life! They mainly guess & can come up with some really good & helpful ideas but will never understand how it is for u! I don't want to scare anyone but it's better to know some truths! It can be hard but u can live with it and live a very happy life! Even if it is servere!!!
I have had endo for almost 15yrs, had many surgeries & treatments but after all this, drs have decided it won't b fixed as even if a tiny bit comes back I can b in hell. Also after a few surgeries u r stuck with scar pain. I wanted a hysterectomy but as I was under 30yrs, they suggested not yet! Plus it prob wouldn't stop my pain. If I did tho it wouldn't have had a chance to spread past my uterus. So now it definitely wouldn't help! My first preg I was in the hospital every week not knowing what was wrong, even tho the endemetriosis was dormant... That's y they say preg helps.... But the pain was from the baby pushing and stretching the bad bits! Some ladies just can't b fixed! It can b controlled with pain relief but if it can't b fixed ur life will change also. I have adjusted my life due to this disease! I cannot do physical things like I used to! I could only do sit down jobs etc, limited housework etc but now I may have made all the adjustments I can & relistically cannot work due to the un-reliability of the pain. Mind u I have kids, going thro another pregnancy now & yes it's painful but the pain will always come & go & it is so worth it! I live mostly a normal life, just most days there is pain, I cannot do a lot, I can look after my kids but some days they will b late to school or will need to prepare their own snack while the pain fades. It also has put major pressure on my partner. He feels useless to help me, worries about me and wonders if I need a full time carer! Also ur partner can make u out to b a burden, even if they don't mean too! And worst part of all of it is most drs have no idea, they r specialised in one part, so the pain team know pain but don't understand endo, pregnancy drs etc can advise on pregnancy but have no idea about the 2 together! Remember, u know ur body best! Ur knowledge will b better than the drs as u specialise in ur life! They mainly guess & can come up with some really good & helpful ideas but will never understand how it is for u! I don't want to scare anyone but it's better to know some truths! It can be hard but u can live with it and live a very happy life! Even if it is servere!!! Even after 9 miscarriages. I'll have 3 beautiful children!
Hi everyone, I've never been officially diagnosed with endometriosis but my symptoms tell me otherwise. I've had everything from pelvic pain, nausea, gastro issues and gas, hip pain going down my leg, pain during sex, bloating, extreme period pain, etc etc. I am 30 now and have had painful periods my whole life, with all of these other symptoms adding to the mix as Ive gotten older. When I first thought that this could all be endo related, it was because of a comment thread like this one. I read about Endovan and tried it with another friend of mine, and that is what made me really know that I had endometriosis - because it helped, a lot. Endo it seems always comes back, but when I was taking the recommended doses of Endovan, I was able to keep most of the pain away and my sex life was pretty much pain free again. Now, I am about 5-7 weeks pregnant and the pain is back with a vengeance. I really think that taking the Endovan helped clear away the fibroids and enabled me to get pregnant, considering I was off birth control for a few years and have never been pregnant before. Unfortunately, I was advised to stop taking it during pregnancy as it hasn't been tested in that way. I am envious of all of the pregnant women I've heard who've barely noticed their pregnancy and been able to work, because the pain, nausea and fatigue is making this so much harder than I had expected. Thank you for all of your stories. I does help to know that I am not alone, and that if I can't handle my normal work load or I get depressed, that I am not the only one. I know that I don't want to misscarry so I sometimes worry that my pain isn't normal, but I do believe that this is meant to be and that it will all be worth it...but after this, I probably wouldnt try to get pregnant again. I don't know how some of you are able to take care of your other children or work while being in constant pain. I hope I have the same strength.
and yes, if you are not pregnant, please try Endovan! Its natural and not expensive and from my experience, it works. I will be back on it after this baby is born!
I don't have endometriosis, but do have fibroids. With my last pregnancy, I have one that grew to the size of a softball. In fact, I had to have an emergency c-section due to it pushing my daughters head to the side so she couldn't fit down the birth canal. That was a long 7 hours of pushing..lol. One thing I found that helped me with the fibroid pain was massage. I went to a therapeutic massage (not the spa massage places) that deals with medical massages like after a car accident. Just let them know you need someone who is skilled with a pregnancy massage. It didn't take away the pain, but it made it tolerable.
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