My Wife's Mystery Severe Lower Back/Abdominal/Pelvic/Leg Pains
Any help or information will be greatly appreciated!
My wife has been in and out of emergency rooms/family doctor/pain specialist doctor on multiple occasions with mysterious/undiagnosed chronic pains starting October 2022.
She's had multiple CT scans of spine and abdomen with nothing out of the ordinary in the results.
An MRI is scheduled for August 2023 (for spine/lower back).
She's always had very bad pains during her menstrual cycle.
We've had problems with infertility.
She has pain during intercourse.
When she had her appendix removed, the surgeon noted to us that it was healed/attached to an ovary (May 2019).
She's had a hysterectomy (uterus removed but ovaries were not), the surgeon noted during the hysterectomy he had removed numerous lesions/adhesions (August 2022).
2 months after the hysterectomy she started suffering from severe pelvic/abdominal/lower back pain (October 2022).
It has since progressed into debilitating lower back/pelvic/abdominal/lower back/leg pains (April 2023).
Pain meds, nerve blockers or muscle relaxers do not relieve any of her pain.
Her current OB GYN seems to be adamant in his opinion that it is not endometriosis.
Has anyone experienced the same situation/symptoms or can possibly shed some light on this?
I appreciate any information.
First, let me say that I'm so sorry your wife is going through this epic journey to try to get relief. Please send her my good wishes. You may want to get a second opinion and find a doctor who is skilled with the tricker/harder to diagnose types of endometriosis. I don't know where you're located, but if you're in the US, there are a handful of experts skilled in detecting and excising endo that tends to evade the typical kinds of diagnostic tools, even MRIs.
I'm an example of this: I had horrible foot/ankle/knee/leg/pelvic pain even after three laps for endo, and no one could figure out what was wrong, not a foot & ankle doctor, not a spine doctor, not even my gynecologist, who was skilled in her own right. I had CTs and MRIs and they didn't show anything.
I did my own research and learned that endo can grow on or near nerves. I suspected I had sciatic nerve endo. I consulted with a Boston surgeon who said my symptoms sounded right for that kind of endo. When I had surgery with him, he actually discovered a large endo node near my sacral nerve. After the surgery my pain almost disappeared...I still have small recurrences now and then, but the surgeon suspects that is from scar tissue from the surgery. I'm two years out and I'm doing much, much better.
I'll also add that I had recurring endometriomas, so the other thing that made a huge difference for me was having both ovaries removed. That is a huge decision, so I'm not necessarily advocating that your wife do that, but if I were her, I'd consider it.
Happy to answer any questions you have about all this. ~Katrina, Endometriosis.net Advocate
thank you for the kind words.
We are located in Ontario, Canada and are hoping the MRI scheduled in a couple of months will bring us some answers.
However, should the MRI come back clear/negative we will definitely be looking for a second opinion.
These "chronic pains" really got severe shortly after she started her new job as a Personal Support Worker which is very labor intensive and quickly increased to debilitating.
We are hoping that this is related to the job (such as muscle or nerve injury) which would likely be easier to treat.
Unfortunately, we are not very optimistic because of her symptoms/occurrences noted in her surgeries years previous to beginning work as a PSW.
We are far past the point of having our own children and she has requested to have her ovaries removed in the past. The doctors say they do not want to be to "drastic" by removal of them if they don't have to.
The physical pain is difficult enough for her to handle, the mental pain and aguish she's been going through is much worse.
Thank you again.I'll be thinking good thoughts that the MRI provides some concrete answers and therefore actions the doctor can take. I'm sorry to hear that you've had doctors who are being conservative in regard to removal of the ovaries...although it can come with some risk factors, to my mind it's more drastic to not remove the ovaries if they are causing such a reduced quality of life for her right now. I think it's challenging for the doctors to put themselves in her shoes and truly understand the physical and emotional pain she's in; if they knew, I feel like they would make different recommendations. I'll be holding her in my thoughts. ~Katrina, Endometriosis.net Advocate
Hi Kevin, I wanted to make sure your forum post got some extra eyes on it, so we shared it on our Facebook page. It got quite a few responses from other endo warriors sharing their experiences, what they wish they knew, and what they did in similar situations. I'll leave the link here for you to check out (please pardon the ridiculously long URL!) https://www.facebook.com/EndometriosisDotNet/posts/pfbid021pmKGxvKPzNmhfj3wEEoDuhg1bQq3oMHw1JFxsjZTRorN5JhnX1tw9NvwNbf3JEFl. Sending you and your wife lots of love this morning. 💛 Kayleigh, Endometriosis.net team Thank you for anonymously sharing on the FB page. I've read through the comments and some were very helpful. I will keep this situation updated. She's on a call-in waiting list, so hopefully the MRI will happen sooner than August.
One of the things that helps my husband with his back pain is a combination of magnetic, heat and cold. What he uses is a HoMedics Magnetic Wave Hot and Cold Therapy Back Support. This can be found at fox leaf organics Good luck I hope it gets better for you.
