Still have pain--is it endo?

Haven't been on here for awhile. I had this surgery to take my pain away, had endo, took uterus, cervix, left ovary out. I still have pain every day. The whole pelvic area. Can endo grow again that fast? And another thing I have four days left on is lupron depot. Made pain excruciating! After 2wks supposed to be better but, no same and then I have the hot flashes bad! I would never ever recommend this. It's supposed to take it away after the first two weeks, and it made mine worse. Is this normal? Does that mean there's more growing in there? I had surgery in jan then again in April. I can't keep going to get it cut out. I'm using ibp800 and it doesn't take it away. Hot/cold patches. And instant heat patches that last 8 hrs. I wear them everywhere. And it hurts to exercise and vacuum still. What's the point of having surgery when the pain is way worse after? I'm going to my normal dr on thur to figure this crap out. It's sssssoooooo frustrating!!

Sending hugs and happy wishes for you to feel better.

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Originally Posted by Normalsoon Haven't been on here for awhile. I had this surgery to take my pain away, had endo, took uterus, cervix, left ovary out. I still have pain every day. The whole pelvic area. Can endo grow again that fast? And another thing I have four days left on is lupron depot. Made pain excruciating! After 2wks supposed to be better but, no same and then I have the hot flashes bad! I would never ever recommend this. It's supposed to take it away after the first two weeks, and it made mine worse. Is this normal? Does that mean there's more growing in there? I had surgery in jan then again in April. I can't keep going to get it cut out. I'm using ibp800 and it doesn't take it away. Hot/cold patches. And instant heat patches that last 8 hrs. I wear them everywhere. And it hurts to exercise and vacuum still. What's the point of having surgery when the pain is way worse after? I'm going to my normal dr on thur to figure this crap out. It's sssssoooooo frustrating!!

I'm so sorry you're still having so much pain plus dealing with Lupron. Endo can be difficult and not all docs are particularly good at treating it. I wish the surgery had been successful in eliminating your pain.

I hope you find relief soon.

Went to the dr and did labs for gall bladder, pancreas, liver. Found nothing. My pain is really bad under upside down v under your sternum about 2inches down. It's right by the main artery going down the middle of your stomach area. Its like someone hit me and it's bruised really bad. They can't find anything. And referred me to a pain specialist 3hrs away. It's a 8week program 8-5. So I would have to stay in a hotel for 8 weeks? Um no. My pelvic pain is getting worse. Lots of cramping and stabbing, specially after the deed which hurts so bad. The top of the pubic bone, and about an inch in and at the back, it's like a needle stabbing me. I am still having hot flashes bad and I have been off of lupron depot for 3weeks. When does your ovary start working again? I don't know what to do, hopefully someone else goes on here and sees it. I am sick of not living my life like before when that's why I got the surgery in the first place!

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Originally Posted by Memmy Sending hugs and happy wishes for you to feel better.

Thank you

(((Normalsoon)))

I am so sorry you are still dealing with so much pain. I know it can be frustrating to deal with pain post hysterectomy.

There are a number of reasons you could be dealing with pain right now even with tests coming back normal. For one, yes it could still be endometriosis. If your surgeon missed any endometriosis, those implants can still be causing pain and issues. Unfortunately, many surgeons simply do not have the extensive experience necessary to allow them to be able to locate and remove all endometriosis. Also, endometriosis sets up an environment for adhesions as does having surgery. So, you could be having pain from some adhesions which I know from personal experience can be intense. Neither endometriosis or adhesions tend to show up on any testing.

You could also have another co-existing health condition. Many women with endometriosis have health issues besides endometriosis which can cause pain. One that comes to mind for you is Interstitial Cystitis (IC) which is a painful bladder condition that can cause pain from ribs to hip. For me, the pain was centered around my pubic bone. In some cases, a cystoscopy with hydrodistention can help with diagnosis. Other times, IC can be diagnosed by process of elimination.

You may also have a gastrointestional issue. Have you ever consulted with a gastroenterologist? You may have IBS for one which can cause cramping and pain from ribs to the lower pelvic region. Again, IBS isn't going to show on any test and can be more of a process of elimination diagnosis.

You could also be feeling the effects of Lupron. No or low estrogen can cause a number of health concerns. Depending on your body, it can take some time for your ovary to function again as it is actually the pituitary gland that needs to decide to start sending signals to the ovary to produce estrogen once more.

Here is my best advice for you. Keep a VERY detailed symptom diary. Don't leave anything out and be a precise as you can. Then sit down with your doctors and go over the symptoms.

I would also encourage you to find a doctor with a more thorough understanding of endometriosis. If there is a local endometriosis support group in your area, those women should be able to put you in touch with local medical professionals who could help.

You should learn what you can about IC, IBS, adhesions, and other co-existing health issues that could be the culprit. There are links in the Resource sticky at the top of this forum that can help you get started on learning more.

I know this can all be overwhelming and frustrating. I lived with increasing pain for 7 years after my hysterectomy before I finally made my way to an endometriosis specialist for excision surgery. By then, I also knew I was dealing with IBS and my specialist also diagnosed me with IC. Following surgery with him, my IC and IBS are exceptionally better and I have had no more issues with endometriosis. So I know there is hope, but it can take some time and leg work to find it.

in there and feel free to post any questions or concerns you may have. Those of us here in the endometriosis forum have first hand experience with this condition so we will all help you the best we can based on what we have gone through and learned.

I do have IC but had a biopsy and didn't have any signs, just all the symptoms. I used to get installations but I have no more "bladder infection" issues. So I thought it wasn't that. Maybe I'll go back on elmiron to see if that helps. No ins issues but I have been using probiotics since oct. all the pain I had before my hyster was when I ovulate. I left one ovary that "looked good" and was fine 5 mo out. Only for a month, then all the pain came back with a vengeance, I also had my appendix removed. I only had a couple spots of endo but my uterus was slightly enlarged no andemyosis, I have never had ibs symptoms before and haven't changed my diet. I also have vulvadenia. But this constant cramping and stabbing where I actually hunch over is all new to me. So any info would be great!

Forgot to add my stomach muscles didn't go back together so it's a finger and a half wide. It feels like my aorta artery under it is popping out, but all tests say its normal

Update.....I went on lupron depot for 2mo to see if it would shrink any in there. It wears off on march 7 then I'm going to journal the next mo, compare pain and figure out if I want to take out my one ovary that's left. I have extreme hot flashes but didn't want to add problems with an "add back" therapy. I've gained 10 ibs in 2 mo and breaking out from the extreme night sweats. I started Wellbutrin for me feeling like a fat cow from gaining I can't wait for spring to get out there and walk. I try to do stuff at home but then I'm on the couch with a heating pack for 2 days because I exercised. I need to find a medium ground. I'll keep you posted.