I had a total hysterectomy/oopherectomy (via robotic lap) 3 years ago stemming from years of endo/adenomyosis. Since then I've had two additional laps for endo excision - each in October. It's October and surprise, surprise I'm again in pain. What's new this time is menstrual-like cramping all the time, worsening after exertion. (I'm divorced so can't tell you if cramping would happen w/ sex.) No bleeding involved. I've read threads with women having similar symptoms but they seem to be newly post-op, have their ovaries and/or have at least part of their cervix. Anyone fit my profile? Any insights are greatly appreciated.
The pain could be a few different things including endometriosis, adhesions, ovarian remnant syndrome (ORS), Interstitial Cystitis (IC), and more.
First, I say IC because if the pain worsens after exertion, it may be the pain increased because of dehydration. Are you drinking plenty of fluids?
Especially since you have had endometriosis issues post hysterectomy, it could very well be that endometriosis has reared its head again. Were any of your prior surgeries with an endometriosis specialist? Most surgeons are not able to completely locate and remove all endometriosis so it is not uncommon to continue to have endometriosis issues post hysterectomy and post oopherectomy.
Are you using HRT? If the dose has changed in any way that could be allowing for the new pain as well.
Because you have endometriosis and you have had several surgeries, it is very possible that the issue is adhesions. Over time, adhesions shorten which can cause an increase in pain. With exertion, there could be more pulling than normal, allowing for the increase in pain.
ORS might be the culprit because if a tiny bit of ovarian tissue is missed, it can grow and even produce hormones. That can allow for cysts and pain. Additionally, any estrogen it produces could allow any remaining endometriosis to flare.
Have you talked to your doctor? Are you keeping a detailed symptom diary?
You should also consider that you may be having bowel related issues which are not uncommon in women with an endometriosis diagnosis.
I know it can be very frustrating to have continued pain and issues following a hysterectomy and it is especially upsetting to have required more surgery. I hope you will surround yourself with a knowledgeable medical team who can help you find the root of the problem and help you feel your best!
I don't think it's dehydration because I drink quite a bit of water each day and have no urinary problems. Maybe I should drink something harder, wine perhaps?
I do see an endo specialist and I have an appointment with him tomorrow. I want to be as prepared as possible for when I go into that visit. The more I can learn before my visit, the better I can process what he tells me.
My biggest concern is that the endo is back but the symptoms are so atypical. I'm experiencing the kind of pain I had back in my 20's (I'm now 42), not the kind of endo pain of recent years. I'm on a very low dose HRT and that's been stable since the surgery so no tweaks there. But with endo being estrogen-dependent, HRT could be working like Miracle Grow. Unfortunately because of other health issues, I have to remain on HRT.
I always thought of adhesion pain as being sharp and/or location-specific. Adhesions can mimic menstrual pain radiating throughout the whole pelvic area?
I've never heard of ORS. Is it something that could develop years after procedures?
I do have IBS but the pain I'm experiencing has been independent of flare-ups (which are mild to begin with) and I have no history of endo on the bowel, intestines, etc.
I'm kicking myself because I haven't kept a symptom diary. I've got the chronology in my head, but that's not nearly as effective as putting things down in writing. There could be patterns other than exertion that I'm missing.
Adhesion pain can vary, sometimes depending on what exactly it is pulling on. For me, a combination of IBS along with the endometriosis and adhesions affecting my bowel caused me to have cramps throughout the pelvic region which is not uncommon when adhesions are affecting the bowel. Obviously I knew they were not uterine cramps since I had no uterus!
Endometriosis pain can also vary depending on what it is affecting. Possibly there are some newer implants causing different pain than what you experienced with older implants.
Yes, ORS can show up years down the road. More than likely your endometriosis specialist will be familiar with ORS and can help determine if it could be at least part of the problem.
Keeping a symptom diary is a pain in the patootie and I have been remiss myself with keeping one in the past. But you are correct, they can help us see patterns we would otherwise miss. In fact, that is how we figured out more of my pain was bowel related than we thought--granted, it was endometriosis and adhesions causing the bowel to act up.
At the top of the Endometriosis Support forum you will also find a Resource Sticky. There is a lot of information there, including a link to information about adhesions, that you might want to look through before your appointment.
Even though you have not been keeping a symptom diary, I would encourage you to write down anything you can from memory. If you can, note anything that helped or worsened symptoms, what exactly did/does the pain feel like (dull, stabbing, sharp), and if you have changed any meds, supplements, food products, etc., write that down as well.
I wish you well for your appointment tomorrow and hope your doctor has some answers!