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Endo recurrance
Hi There-
I am new to this forum but sadly not to endometriosis. I have had two reconstructive surgeries- the last in 2010. I lived pretty much pain free after that until 6 months ago. My doc had told me to try to get pregnant as soon as possible after last surgery but then I got divorced. I am now finally in an amazing relationship and want a baby badly with him but am so scared it is not going to be possible. Now the pain and suffering is almost debilitating. It is mostly left side and cervical. It is made worst by any activity, especially walking (tough because I teach dance and theatre for a living) I am bleeding every 20 days for 7-9 days. I vomit for 2 days before my period starts. I do not sleep, or eat, and I barely function. I am 35 and really want to have a baby now. I am going to see my specialist on Monday and am just terrified she is going to tell me another surgery is needed because I cannot handle the hormones to stop the bleeding.I am not really asking a question here, more just reaching out for support.
I am new to this forum but sadly not to endometriosis. I have had two reconstructive surgeries- the last in 2010. I lived pretty much pain free after that until 6 months ago. My doc had told me to try to get pregnant as soon as possible after last surgery but then I got divorced. I am now finally in an amazing relationship and want a baby badly with him but am so scared it is not going to be possible. Now the pain and suffering is almost debilitating. It is mostly left side and cervical. It is made worst by any activity, especially walking (tough because I teach dance and theatre for a living) I am bleeding every 20 days for 7-9 days. I vomit for 2 days before my period starts. I do not sleep, or eat, and I barely function. I am 35 and really want to have a baby now. I am going to see my specialist on Monday and am just terrified she is going to tell me another surgery is needed because I cannot handle the hormones to stop the bleeding.I am not really asking a question here, more just reaching out for support.
Well my dear I really hope this works for you. I will send my prayers and support because after 23 years I really really hope you get some relief. You really deserve it. God this disease is the worst. No one should have to suffer this it is relentless ):
It will not cure Endo. I am having it for multiple other issues I have with my cervix and uterus. Chances I making things for me 100% worse or better is 50/50. I am taking the chance because of the 23 yrs I have suffered at the hands of doctors. I may not get a surgeon like the one I have that is an Endo specialist he is getting older and I am afraid he is it from where I live and I feel if I pass this opportunity I will most likely have to have one later with an inexperienced surgeon which will make everything 10x worse
But I thought that a hysterectomy did not necessarily end the disease and certainly not the pain...Am I wrong?
It seems my pain lessening was short lived. I am once again swollen like I'm preggers and experiencing debilitating pain. It is one of the busiest work weeks of the year for me and I am so weary of this....Awake at 1 am because my shoulder is screaming and it feels like a butcher knife is in my left ovary. This disease is relentless. I would not wish this pain on my worst enemy ):
It seems my pain lessening was short lived. I am once again swollen like I'm preggers and experiencing debilitating pain. It is one of the busiest work weeks of the year for me and I am so weary of this....Awake at 1 am because my shoulder is screaming and it feels like a butcher knife is in my left ovary. This disease is relentless. I would not wish this pain on my worst enemy ):
That is good you have the support. :)
I have my hysterectomy coming up so soon May 9th. Just want to move on with my life.
I have my hysterectomy coming up so soon May 9th. Just want to move on with my life.
Pain has lessened a bit. getting by with half a pain pill at night. As long as I do limited activity (no walking or lifting anything) I am ok. Intercourse is the most painful it's ever been though. My man is so supportive and says that we don't have to have sex but I do not want to give up this part of our life. It's important to me to try to be as 'normal' as possible. 2 months till surgery just feels like such a looooooonnggg time away ):
I just saw my physio/chiropractor and she said the shoulder pain may be caused by me holding myself hunched over in pain from my abdomen. She suggested massage which i really could use. My doc is not in today, so I am waiting to speak with her. The lower abdomen is very swollen and painful today as well. Thanks (:
That thoracic endo sounds scary as hell. I really hope that is not a possibility although I do have all the symptoms. And especially considering the studies I read that said it is most common in women with stage 4 endo who have had previous reconstructive surgeries. Yikes. Fingers crossed this is not it.
That thoracic endo sounds scary as hell. I really hope that is not a possibility although I do have all the symptoms. And especially considering the studies I read that said it is most common in women with stage 4 endo who have had previous reconstructive surgeries. Yikes. Fingers crossed this is not it.
I haven't but I will. God, I do not want to even consider a hysterectomy as my main goal is to get pregnant soon. I think I will call and book a phone appointment with Dr.Williams as the pain is still pretty severe even though the bleeding has basically stopped. I am going to see a physio this afternoon to see if there is anything she can do to help me with the pain. I definitely get the swollen belly (particularly on the left side) when my pain is at it's worst- usually by the end of the day I look pregnant. The only way I can avoid this is by laying absolutely still and doing nothing which is pretty difficult considering I have a very active job. Also, intercourse has become almost unbearably painful. This is new- usually I would only have pain after intercourse and rarely depending on the time of the month. I will look up the things you suggested. Bless.
5) Have u looked at symptoms of thoracic endo ? Just a thought from what you're saying.
Okay here is what was said.
1) Yes, for me the diaphragm pain coincided with my flow, usually day three and extremely predictable. I'm not sure about the new consistent pain though. I would consult with a doc if it is new/worse pain.
2) Just to consider: With adenomyosis you can have chronic uterine pain/cramping. But yes the shoulder pain can be indicative of endo on diaphragm.
3) I have endo on the left side of my diaphragm. I get deep shoulder pain around the time of my period.
4) Yes, it's something to consider esp if the cramping and low back pain doesn't go away. Those are exactly my symptoms. And I always had Horrible periods with severe pain and clots. Endo can cause chronic pain, but the uterine pain can either be pelvic floor disorder, I guess nerve pain too, congested pelvic syndrome (enlarged uterine/ovarian veins; which can be linked to adenomyosis), or adenomyosis. I think that covers the possibilities!
Also can be an indicator of Adeno is swollen lower pelvic region (feel/look like few mo's preggo), enlarged uterus, uterine fibroids, sensation that uterus is weighing down, etc.
If adenomyosis is suspected and a hyst is considered, be sure to get cervix removed too as this is part of the uterus and can contain Adeno
1) Yes, for me the diaphragm pain coincided with my flow, usually day three and extremely predictable. I'm not sure about the new consistent pain though. I would consult with a doc if it is new/worse pain.
2) Just to consider: With adenomyosis you can have chronic uterine pain/cramping. But yes the shoulder pain can be indicative of endo on diaphragm.
3) I have endo on the left side of my diaphragm. I get deep shoulder pain around the time of my period.
4) Yes, it's something to consider esp if the cramping and low back pain doesn't go away. Those are exactly my symptoms. And I always had Horrible periods with severe pain and clots. Endo can cause chronic pain, but the uterine pain can either be pelvic floor disorder, I guess nerve pain too, congested pelvic syndrome (enlarged uterine/ovarian veins; which can be linked to adenomyosis), or adenomyosis. I think that covers the possibilities!
Also can be an indicator of Adeno is swollen lower pelvic region (feel/look like few mo's preggo), enlarged uterus, uterine fibroids, sensation that uterus is weighing down, etc.
If adenomyosis is suspected and a hyst is considered, be sure to get cervix removed too as this is part of the uterus and can contain Adeno
Waiting on some responses now I will get back to you :)
Never feel alone there are many of us out there and when in doubt go to my blog and look at all these faces that have Endo.
http://endendoforever.blogspot.ca/p/the-faces-of-endo.html
Never feel alone there are many of us out there and when in doubt go to my blog and look at all these faces that have Endo.
http://endendoforever.blogspot.ca/p/the-faces-of-endo.html
Thanks so much. You're a total life line to me right now. I feel so isolated. Surrounded by support yet so alone in this suffering. Bless you.
If it's cyclic pain in the shoulder you could have Endo on the lung or diaphragm although that's very rare. Let me check with some sources and see what I come up with :) glad you got some sleep even if it was limited
I have had the shoulder pain before on the first or second day of my period but not this intense. That is what is so weird right now- every day for the past 3 weeks has felt like the first day of my period. Terrible cramping, lower back and shoulder pain, weepiness, and exhaustion. Last night I took a whole pain pill (I've only been taking a half) and managed to sleep a few hours but this is really catching up with me. Things are very busy with my work and I'm having a hard time functioning. Thanks for listening. I sure do appreciate it.
It sounds like your endometrium is shedding. I have the same thing happen. I would take the meds they give you but try to only take it if 100% needed. If you have shoulder pain is that with your period? Has that ever happened before?
Ok so pain increasing. Saw family doc and she prescribed some dilaudid 4 mg. I am scared to take it because I lived in an opiate haze for years prior to my last surgery and it was so hard to get off. My pain is being referred into my groin and especially into my left shoulder. I am still bleeding. Yesterday I got worried maybe I was having an ectopic pregnancy as I had a friend with these issues who had one and her symptoms echoed mine. Did a preg test- not pregnant. Going to hold on till Tuesday when I can have a phone consult with my surgeon. I am sorry to be a pain but do you think this is normal considering I've been on the norlutate for 3 weeks now? Agh this is so frustrating. I'm so exhausted. I can't stop crying. I need help and answers.
i am losing tissue still- looks like scabs? and my pain is so bad I've literally been crying all day. So this is not normal right? I talked to my surgeon's nurse on Tues and she was supposed to talk to the doc and get back to me today but so far I've heard nothing. I'm scared and I am suffering so much.
Sorry I meant to respond yesterday. Yes for me 100% taking the bcp continuously helped stop the pain. I was on marvelon. I just recently came off as I am having a hyster may 9th
My bleeding has pretty much stopped but the pain is still here and still awful. The good ol' butcher knife being stabbed through my left lower abdomen and spine. When you have done the hormones did you have a lessening of pain? Looking for some hope here.
yep either bright red or black. chunks of skin. I have t3's but they do almost nothing. I can't take any more anti inflammatories because they are making my Crohn's flare. So adding more pain to the misery. I feel so defeated today.
Red or dark tissue right? If so that is what has been happening to me. I'm sorry you are in so much pain. Did the doctor give you any pain meds?
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