Just an update for everyone, I'm doing a 3d ultrasound tomorrow after visiting a gynaecologist he suspects bowel endometriosis. He wants to do a laparoscopy, but I'm not keen on being opened up if he isn't 100% sure. Will a 3d ultrasound show bowel endometriosis? Of the any people they diagnose after laparoscopy, I'd like to know how many end up NOT having the disease? Does anyone have any knowledge about this please? Thank you!
I have heard people say that they for sure thought that they had it but when they had a lap they found nothing. It wont hurt to have a look to just to find out yes or no. I have found more that people have responded that yes they did have it more than no
Keep me updated
Hi ticked, thanks for your response, since you were diagnosed, did you have any on your bowel? Did your endo show up on ultrasound?
Before my surgery I was told I had ibs for 15yrs I never believed that. No ultrasound or cat scan picked up on it. I posted a link on the Endo board of my story maybe read it over. I was misdiagnosed for 25yrs. Part II of the story they are posting about what they found during surgery. It might help
The scan came back and the doc didnt find anything except for one if my ovaries looking poly cystic. I used to have pcos about 4 yrs ago but then it 'went away' once I lost 17 kilos. So now that he's ruled out large endometriosis and the adhesions, I have to wonder whether I should do the laparoscopy to find out,.,,,
And thank u il have a read
I have endometriosis and I feel your pain , from what ive heard and felt , yes its common to get nausea all the time , i take alot of gravol , or have it on me just in case because for me it comes in a flash , sounds like you most likely have endometriosis , perhaps seek help to be put on a birth control pill .
Thanks I'm considering the mirena...I keep loosing weight though, can't be from endo can it?
I got dianosed 9 months before my wedding with endo. I too have extreme nausea. It was so bad I did not want to leave the house. I thought people would think I had an eating disorder because I'm tall and thin. I have gotten some relief from zofran and acupuncture treatments. I also try preventive therapy with supplements. Good luck. I have been there...
Lena go get tested for Celiac Disease to just to rule that out.
I have already been tested, I have the genes but no celiac antibodies. Thanks for the suggestion though.
Lana, I've had chronic migraines for years, nausea since the middle of last year and since my surgeries (also had a mirena inserted) its gone to vomiting, unable to keep anything down or no appetite at all. I seriously don't enjoy food, which is weird I've lost 20kg since September.
I tried yaz, microgyn 25, microgyn 35, microgyn 50, diane and a few others I can't think the names of (its 1:40am here) none of them helped.
I live with chronic pain (RSD) due to surgeries, you can read my story below called update after surgery.
Have you gone in for a lap? I see my new specialist on Friday to book surgery number 8 since May last year.
Lena* sorry. Also good luck I hope you get some relief soon!
I was like you with BC as well, until my doctor put me on migrogestin FE 1.5. The higher of the dose works well for me. I have no side effects at all. I'm pretty amazed. No weight gain, no headaches, no depression. It does keep endometriosis at bay. They removed my left ovary, took my tubes and did an eblation. So I only take BC for hormones..ask your doc if you can try it. I was always sensitive...even to the point where I was severely depressed. Now I'm great! Good luck. It's all trial and error.
Hi there, sorry to hear what you've been through, as of today I've lost almost 20 kilos too. I
haven't had surgery yet, I am on a waiting list. I think my nausea def gets worse with the migraines, perhaps you should have a head scan & of your neck to make sure it's not something related to that? I am considering doing that myself. My gyno says he will put the mirena in during the surgery
I hope you get better soon, my prayers are with u
Glad to hear a success story, thank you
Lena my advice is to find a specialist who will listen to you. My 15yr old has both endo and adenomyosis and has been through hell. No one believed she was even in pain. She is on microliter and there are no sugar pills so she has no period. She also has 2 more as in. Hope you get it all sorted soon!
Sorry to hear about your child. Thank you for your suggestions.
Just found this looking for causes of constant nausea. I've had two endoscopies which ruled out pretty much everything related to the stomach although apparently I have gastritis. The nausea is constant and debilitating. I've been on a bcp for the past several years that I take everyday to prevent a period because I get very bad migraines with my period. I'm wondering if this could cause endo and should I see my gyno next? The gastroenterologist says I have ibs but I don't have any of the symptoms of that. Am at my wits end.
Hi there, I sympathise. I am the same. I suggest two things - get your stool checked for parasites. And secondly, if that's clear, have your hormones checked out and ask your doctor if you can be check for endometriosis. I am booked in for a laparoscopy in a month to check if I have it - after a year of trying to find out what's wrong.
My two endoscopies also were clear, but I also had a colonoscopy. I suggest you do the same. Hope I've been helpful.
Just checking in to see what is going on now. How is the nausea still the same?
Hi.. I struggled with terrible symptoms for almost a year. I went to 3 different gyns who did regular and transvaginal ultrasounds and told me I was 'fine' although I was bleeding more than 3 weeks out of the month, my waist was more than 12" bigger with no weight gain and the pain was so bad at mid cycle and during my period I couldn't function or work. The 4th doctor suggested laproscopic surgery and I agreed. I needed answers. My right ovary was encased with endometriosis and actually adhering it to the rear wall of my abdomen. Since then I have tried to minimize the recurrence by eating organic foods, free range beef, etc... So many foods have added hormones our bodies think are ours. Unfortunately there are a lot of things our bodies recognize as estrogen and it contributes to the growth of the endo. Soy is one of these 'pseudo estrogens'. There are some good books out there about estrogen dominance and I found it worthwhile to do what I could to minimize these aggravating factors since my sisters best friend has had 4 surgeries for endo and my cousin has had 3. I've only had the one so far but I hit peri menopause a year and a half ago and my symptoms are starting to return. I'm hoping and praying after menopause it will be the end of the endo for me although it seems that it can continue for some women even afterwards. The laproscopic surgery wasn't that bad and I was back to work after 4 or 5 days. It really wasn't that difficult of a recovery and the relief of the symptoms, and finally KNOWING what was going on was totally worth it.
Hi ticked, my nausea has improved somewhat, and my ibs - but once i ovulate until i reach my period the nausea gets much worse so now im convinced its hormonal related. After a year waiting for a laproscopy, i am booked in for 9 days. Never been so excited about surgery lol.
Hi there, thats terrible. My periods luckily dont go for that long but its really great that you found answers. I have eliminated soy a couple months ago and my nausea has improved so i totally agree with you. My surgery is in 9 days after a year of waiting and i cant wait. It must be such a relief knowing its not all in your head like doctors love to think. I am still in my 20s so unfortunately menapause is far away from me. I pray you feel better soon xx
Thank you all for your advice. I was diagnsed with endometriosis just yesterday and am now recovering from surgery. It was behind both ovaries & also at the back of my uterus towards my bowel. Hopefully the pain and nausea will dissappear.but only time will tell.
This past year has been hell but im optimistic things will get better now!
I'm scheduled to have laparoscopy along with embloization for fibroids on the 19th of this month for my endo. You seem to have a lot of knowledge about endo. Do you think it''s wise to have these procedures or just go head and remove the urterus? I'm so torn since Im only 35years old. I do not want anymore children I'm just scared. Now I'm experincing nausea and vomitting I can't eat anything without getting sick.
The problem with a hyster is that it will not solve the problem with Endo. If your surgeon isn't skilled and excise the Endo it can come back, in fact it can come back regardless just at a slower pace with excision. If you have ever had ovarian disease (Endometrioma) I just became aware that even that can grow back as its different cell of Endo. I always assumed that if you excised the disease it would give you substantial relief as well as being on a BCP of some sort. I know for me it has helped a lot but many women can't take the pill or any form of HRT. For me it was a life saver literally.
Is it possible you have adenomyosis? A lot of women who have Fibroids and Endo often have Adeno and you are the right age for it.
Have you tried to the Endo diet to elevate some of the Endo symptoms? It is hard but I found it to help a little with pain but not all.
In my opinion I would have the procedure done. I am not a doctor I am only a patient who has suffered for 23 yrs. I have sat on the fence about a hyst since I was 30 and in the end it goes back to a 50/50 chance and that is with having a good surgeon. However many have found relief.
Have you ever been tested for any type of gluten allergy or celiac? I was tested but it came back negative but was positive for Wheat, spelt and Dairy intolerance.
Right now I am fighting for surgery myself and it is for a hyster. I had a PSN done (Presacral Neurectomy) and I don't feel like it helped and they say that if that didn't help I could possibly have Adeno as well. The continuous BCP for me has helped I am on Marvelon.
What have you tried to suppress your period and ovulation? How many surgeries have you had? Have you always had fibroids or is that a new thing? When was your last surgery?
I had surgrey in 2007 I had to have my right ovary and tube removed. I had my first laposcopic surg in 2001. I was DX with endo right after I had my daughter in 1998. I wasn't able to take the depo shot becasue I lost 2 inches of hair with the first shot and I gained so much weight. I have several differant types of cancer in my family and I'm afraid of the BC because of the hormone. I never tried to supress my periods or my ovulation this would be my first attempt with the embolization to supress the bleeding. I only have the severe pain when I have my periods or a week before. I'm going to do some research on the Adeno to see if that may be what I have.
The fibroids are new for me. I had severe pain one particular day and I fell to the floor and I wasn't able to move. By me working in the hospital with my doctors I was able to call and ask for a ultrasound and thats how I found out. I'm one of those patients that try to be a proactive and tell the doctor what needs to be done. LOL :-). But with this situation I'm stuck and clueless. I will talk to the Dr before she preform my BX on monday.
haah no worries you are like me and that is a good thing. Most doctors and even ER doctors have no idea what Endo is and what problems could be because of it or the pain that it causes, so most of the time I need to educate them myself. Fibroids and Adeno def go hand in hand together. Did any of your ultrasound reports state that your uterus was enlarged? the only way to tell 100% if you have adeno is through a hyster unfortunately but the signs are there just like Endo. A good surgeon will know or have an idea.
The BCP has been my lifesaver and not just for Endo. It is the only thing that regulates my hormones however I have been breaking out like mad lately and that has not happened since I started them 7 yrs ago.
Make sure you get copies of your Ultrasound reports because they are very important to have because there have been times that they were looking at one thing and something else was detected but they ignore it because it has nothing to do with your complaint. For example I had an enlarged tube with blood around it. That was Endo however they had no idea in the ER so I was sent home. Brought that to the pain management clinic and I told her what it meant hahaha .. I am telling you most doctors don't have a clue about endo.
If interested not sure if you know about it or not there is a million woman march on March 13th 2013 all around the world but the big one is in DC. First one ever and we are going to be loud. So if interested look it up on Facebook to find a location close to you doing the march :)
Thanks you so much for the information! Finally I'm at ease I will look back at my ultrasound results and request my records from my previous gyn doc to see what the two can compare. I will look up the info for the march. Thanks again. I will keep you updated.
That's great please do :) I am everywhere online EndEndoForever so if you are looking for support from other Endosisters Twitter is a good place there are a ton. On here not many people come here just when they are looking for answers but there is a lot of support now on social networking.
Dr.Redwine can read your reports or photos on Endometropolis on Facebook he is a retired 30 yr veteran of this disease and he is there to answer questions he is amazing and you will get 100% facts from him which is what you want. There are too many watered down guesses about Endo so that is why so many Dr's and people are confused.
Omg your are a true blessing. I'm so serious I prayed for the right answers and you have given me more than enough insisght. Can you give me the exact website to get to the Dr. The physican I was seeing retired and I do not trust anyone else. I rpomise I will not bother you anymore after this.
Sure I will inbox you all the good connections that you can look into :)
Hey Lena. I might be too late on this post, but oh well. I have endometriosis and I cannot take an oral form of birth control. It made all my symptoms worse. However, I have been on depo provera, a birth control shot, for years and it has worked wonders!!! Just an idea. I don't know why it acts differently, but it definitely has been making life bearable.
Thank you, You are the 2nd person who suggested I try this instead of the pill. However I did my research and apparently it's the estrogen that causes all the problems with side effects etc. all the pills I tried in the past had higher doses of estrogen. I heard aleese is lower in estrogen. I plan on trying this for 3 months and if I don't feel better I will definitely try depo provera. Did you get any side effects? How is your pain levels?
My wife has suffered with Endo since her early 20's (in her late 40's now). She's had a hysterectomy 5 years ago, but the surgeon wasn't able to remove one of her ovaries that is adhered to her pelvic bone. The pain went away for some time but now it's back in full force, she now has new symptoms including vomiting, incontinence, occasional dizziness, and for awhile her abdomen was enlarged.
No doctor (including her previous ones) have found anything with multiple tests including MRI's, cancer, Upper and Lower GI, HADI Imaging of the bile duct and liver, Scan of abdomen and pelvis.
They won't do any exploratory surgery to find out the problem. We both think it's the Endo and that they aren't catching it in the scans.
We're out of options other than taking medication with harmful side effects to mask the pain and symptoms and not solve anything.
Does anyone have any recommendations or has gone through this before and what were you able to do to treat this?
We are open to non-traditional medicines.
Do some more reading instead of bashing people. Birth control pills cause endometriosis symptoms to increase because all it does is mask the symptoms. If you mask it it won't be fixed. And once you go off the symptoms increase more than before. B control is another leading cause of causing hormonal imbalances. Before you believe everything your dr says question him and do some research your self. Talk to a homeopathic specialist if you are too lazy to pick up a text book. Don't call people giving out vital information stupid. You are stupid, I highly doubt you have ever done any research on your own and have taken what ever is spit out at you. If you ask a regular dr about endometriosis most just say they don't know anything about it in depth just the term. They say there is no cure and the only thing they can do for you is mask it with b control. When you question the b control with masking they will respond with well yeah it doesn't fix it just suppress so it can get worse. I had a moron dr tell me that when I questioned. I research and ask questions before I take anything just for this harmful reason. I suggest you read a bit more and ask more questions before you go around bashing people do I you basing everything on personal belief . Also. Note what you said. "The pill makes me feel better! I don't feel the migraines nausea ect" wonder why? masking it. You are masking it! >< now if you keep the progesterone up with that pill you have a higher chance of having an ovarian cyst form more than likely have to do surgery which still won't do anything because now you have menopause sooner. When that cyst forms take colloidal silver throw in nephronal because you will have blood clots. Start taking calcium d glucrate and off those pain killers if you want to save your life. If you stay on those pills you will only hurt your self more and you will shorten your life
Get your facts right ticked and quite being so ticked off all the time. Don't act like you know everything giving all these users false information . You bashed the only commenter that took time to actually help people and then acted like you knew everything when you don't . All you know is how to suppress not actually fix the issue.
Thanks for your response. I know there were some posts that I have incorrectly gave some sort of responses to that I was not up to date on. As you can see this posts dates back really far and for me after tons of research even talking to top specialist things are different coming from many different surgeons. I was told that when I was first diagnosed in 2007 that the BCP and Lupron suppress Endo. It wasn't until late last year that I was corrected. I am not trying to bash anyone and there was one person on this site that I possibly did that to and it might be this particular post but I have written so many I am not sure what one it is. I was in the wrong when I said it suppresses Endo as that is what I was told. I can't delete posts so there is nothing I can do about it. I would hope in the future you would respond back to me in private message as I took the time to explain this to you. I am not trying to attack anyone and I am sorry that I can not delete posts its just not how this site works.
Yes endometriosis does cause nausea and bowel symptoms even if it is not on your bowel..I too have suffered with endo for 25 years or so and unfortunately had a hysterectomy 10 years ago only to have it continue to cause issues...I ended up losing half my colon to the disease and had spread from my diaphragm to my anus...even without ovaries...it actually grows it's own nerve and estrogen supply. I too suffered with severe migraines even while on bc...no right or wrong answers in this dreadful disease other then see an endometriosis specialist! I sure wish I had all those years ago as my story might have been much different...not that my life is horrible, but this disease has taken MUCH from me. I hate seeing Dr.'s who do not understand this disease cutting women up without excising the disease but just taking the female organs as this does not cure the disease...only cutting out any and all lesions will make you well...good luck in this journey...it is a tough one!
Definitely have the surgery. This is my story. I have an identical twin sister who was diagnosed with endometriosis after years of pain, long periods and all the problems associated with endo. I also was having the same symptoms. When my twin had her surgery her bowels were stuck to her uterus. The doc tried to pry it away, but was worried about perforating her bowels, so he did the best he could. They were able to remove her cervex and her tubes, but they could not remove her uterus. I was to the point where I was not able to poop for about two months. I kept telling my doctor that I was sure I had end and my insides felt like they were being squeezed. I visited the ER 3 times, had 3 ct scan with contrast and they finally said I had diverticulitus. When I was in the OR, the surgen found a large mass wrapped around my colon. He said I should be dead. I had a blockage, this is why when I pooped it only came out like stingy liquid. Guess what, when the did the biopsy it was endometriosis....Have the surgery I am lucky to still be here.
This is why we need to see Endometriosis specialists as they can handle the bowels hooked to other organs and the wrong places...so they can do it right the first time...I had frozen pelvis 3 times, one before I ever had a surgery which proved it was endo causing the adhesions as it could have been nothing else, then the other two times were after the dr. took all my female organs including the ovaries ~ I had to have 1/2 my colon removed and had my organs gluing together s well...see a specialist rather then just getting diagnosis so they can do it all in one surgery...it is not a disease to mess with but in the hands of a non-specialist you will end up with multiple surgeries...I have lost so many organs to this disease it's not even funny...but I laugh and say I need a zipper installed in my abdomen to give easier access...;) I too was unable to have bm's and no dr.'s would hear me...this went on for over 6 years where I was only able to get waste out with enemas or colon hydrotherapy and even that was hard...I lived on juice fasting for many years...it truly is a tough journey which is why it is so critical to get into the hands of a specialist!
My doctor suspects I have endometriosis due to the irregular bleeding, nausea, and pain during my periods. Back in June she switched me to continual birth control (NuvaRing) which has really helped with all the symptoms except the nausea... She thinks we should wait until I'm ready to have kids to do the laproscopy but considering the cramps are coming back and the nausea is every morning I was wondering if it was a really big relief for you to do the surgery?
Also did your insurance pick up some of the cost?
I was wondering how do you feel after the laporoscopy? My story is similar to yours...
Had constant nausea for 18 months, did all possible tests, scans, didn't have a pain, but low grate fever and nausea, my period was very dry, I am in my late 30's. Had laporoscopy done in 2004, was diagnosed with endo and now in 2014, have a healthy son in between. So, after all the tests, that were normal, I was really struggling with bad nausea, went to anxiety stage and then to deep depression, didn't want to live like that, it was rwally bad....until I went to see the doc and I suggested if we do the surgery, so they can look inside, I was devastated and desperate, I don't know what was going on with me, so I was ready to do anything but not live like that...
So, I felt better after surgery, now done 4 shots to stop my cycle, even then I got one in between... I don't have nausea anymore, but sometimes discomfort in the whole body that last for a couple days...
My questions is did you do shots and how many and how do you feel now?
Thank you very much!
Ps please anyone are welcome to reply
My 17 year old daughter was just diagnosed with Endometriosis about a week ago. She has also had Mono the last 3 months. She is suffering terribly from nausea. Zofran doesn't even help. She has been Gluten Free the last 3 years as we thought gluten was the culprit. Being GF has helped her symptoms, but now she is miserable. Nothing sounds appetizing and her nausea gets progressively worse as the day goes on. The GI doctor wants to do an endoscopy, but wants to wait til we see the Endocrinologist this Thursday. Praying for a correct diagnosis and helpful treatment. The BCP they have her on doesn't seem to be helping her... yet.
We were told is this can be hereditary. Yep, it can be; Grandma had it, my Mom, Me and now my girl. ARG!!! Good news is we are seeing a GYN who studied with the top guy at Stanford and we are hopeful God will answer our prayers and she will find some relief. Please say a prayer for her as I'm praying for all of you as well. And thanks for letting me vent some. It's awful seeing your child suffer :(
WHAT CAN BE DONE TO HELP THE NAUSEA???
How was your daughter diagnozed with Endo? Doc only can susspect but to be sure they do laporoscopy, unless they found systs or anything else doing ultasound...
Before you treat nausea, you need to understand where the roots are...
I try everything it didn't help until did laporoskopy and started hormone theraphy with lupron...
Did she had any stress resently?
In meanwhile just rest, stress free, healthy diet, and lots of love...
God bless your daughter and make her feel better.
I am due to have a laparoscopy at the end of the month, I thought I was going mad, didn't know what was wrong I have lived with constant nausea for 2 years or more waiting for this surgery, I have lost sooooo much weight in the meantime ( not that I have ever been big) of all my symptoms, pain during/after sex which causes bleeding, irregular periods to the point that I now have not had one since Feb and a few more, the nausea has been the worst. I really feel my symptoms are the cause of endometriosis, wish me luck ladies as I long to feel well, awake and less depressed again
I live in South Africa and the medical we have here is not of the good ones. I have been living with megrains that come only when i'm on my period every month since 2009, the nausea only started a few months ago so bad I thought I was pregnant which turned out not to be. Always bloated and painful like strong period pains everyday even thought I'm not on my period. The worst is when I sit a lot swell up so much and suffer from constipation all the time. Farting relieves the pain a bit but only for a while then I have to take laxatives to just get some relieve. Gyneys just say I have a hormone problem. I am on contraceptives but without them I don't suffer with megrain but cannot go with out them either as I don't want more children. And can't have hysterectomy as I am scared as to with all the problems we have with our medical systems here in South africa. The last woman I heard from she has nothing but problems since her hysterectomy she almost died.
So where would I start with getting help.