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Other Issues Related Or Not To Endometriosis
A MyEndometriosisTeam Member asked a question 💭

Hi all, hopefully I can make sense of my question here as I am trying to gather info to figure out what's going on with me. There's a six year old similar post but hopefully I can get a few more answers. I don't have an official diagnosis, last gynae was like "yeh, it might be endo, here, get the coil fitted, also you are fat, good day", so I don't even know if it is what I think it is
So basically I would like to know if people with a diagnosis have any of the following issues along with the… read more

posted January 6, 2020
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A MyEndometriosisTeam Member

Welcome and I'm sorry for all you're going through. I do not get the nipple pain, but have talked to other women on here who do, so I would say that you're not alone in that one.

As to two areas of pain at the same time, yes, I often have pelvic pain and then upper thigh/hip pain or it can go down my leg. I was told by my second excision surgeon, Dr. Mosbrucker, that I had Pelvic Congestion Syndrome. Basically, the lymph channels and nerves are messed up by endo. My feet swell much less since her surgery. I also take methylated B-12 and it has reduced the nerve pain a lot.

I sometimes get lower back pain, but that is much better since my second excision surgery, which included a hysterectomy; I had terrible adenomyosis and endo on my uterosacral ligaments (they suspend your uterus to your lower back, so that's why lots of EndoWarriors have low back pain). I have had two excision surgeries, which were the best things I ever did. That reduced my pain quite a bit. I would not be surprised about your third question, since so often endo can sit on the nerves and even leave the pelvis. They say it leaving the pelvic cavity is rare, but I disagree and I think more research is coming out proving it is more common than previously thought. I personally have never had it go as high as my neck, but I don't think it's impossible.

If you want, here's a list of stuff I have found useful over the years. I would start with Dr. Possover's lecture and then Endometriosis Foundation of America and Dr. Cook's Instagram. All really helpful stuff and I think you will find more resources about neuropathy, etc. I hope you get some answers; let me know, please & thanks, if I can help at all.
https://www.myendometriosisteam.com/users/5d1ab...

posted January 6, 2020
A MyEndometriosisTeam Member

Yes. I hope you find an endo excision expert. My understanding is it is really tough to get one under the NHS. I was listening to this podcast and the host lives in the UK. She thought she had had excision surgery, but it turned out the guy had only done ablation! Just so wrong.
http://www.thisendolife.com/this-endolife-podca...

Also, another thought I forgot to put in the above comment. It's rare, but there is something called umbilical endometriosis. It's when endo implants are in the belly button and they can actually bleed just like all other endo implants. Some women with it describe having to use sanitary pads on their period because they bleed out their belly button. So, you might just have hernias, but it's something else I wanted you aware of just in case it's not. I've never been able to find a 'layperson' article on it, but here's one that I thought was fairly understandable.
https://www.hindawi.com/journals/criog/2016/930...

posted January 6, 2020
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member wow that's really super helpful, it's exactly what I'm lookin for, finding about all experiences and in depth info about what it does to the body, I am definitely going to read through it all, thank you very much! Also I am really glad that you found an expert who did help you and that it is better now, it gives me hope, I need a lot of that too.

posted January 6, 2020
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member thanks for your answer, it's true that doctors and specialists, upon finding out about the hernias, blamed them for all the pain, but the surgeon who repaired two of them above the navel said that they couldn't have anything to do with the pelvic pain (too far), the ovulation and period pain (periodical) and the pain when emptying the bladder.
I have seen three gynaecologist since I got the hernias repaired and they won't give me a laparoscopy to confirm so I'm trying to get the surgeon to do it when he repairs the hernia he left, hopefully I'll get clarity then.

posted January 6, 2020
A MyEndometriosisTeam Member

It sounds like the pain could largely be caused by those hernias, possibly core muscle weakness. You might have endo, which, I would try to get confirmed. That would require ultrasound or Sono. I haven't ever heard of nipple pain associated with endo but I know everyone is different. I know generalized breast pain is one. I have it both from endo and from my birth control (progestin only birth control).

posted January 6, 2020

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