Looking for advice
Hi All
I'm new on here and not sure if right place as I'm getting told from IBS to arthritis!!
Over the years I have suffered from ectopic pregnancy, IVF and the latest tube removal.
My tube removal came after suffering from sever back and groin pain with a swollen tummy that I finally got given a scan which should significant changed which my doctor informed over the phone could only be due to a sexual disease which I explained it couldn't be as I'd been with my husband 19 years at the time and due to ivf we both and been fully sexual health screened , she didn't seem to be convinced. It effected my mental health as was starting to think maybe she was right and something had been missed and put so much strain on my relationship, in the end I paid for a private test which showed no disease. Finally after failing to action my referral I got to see a lovely doctor in a private hospital through NHS- think it's because I wasn't happy about she hadn' actioned my referral and would of meant even more waiting . Sorry digression there , so my consultant after two more scans decided my tubes needed to come out , after surgery she said she didn't know how I'd been coping they were so big and after biopsy it showed its was in fact endo growing in both tubes !! Not a sexual health problem !!
That was a July last year and after I felt alot better till a few months ago when my back hip and pelvis pain with swollen tummy is back with vengeance, I've been back and forth to doctors who say it's not perimenopause as I'm too young , it's probably ibs and pain arthritis!! Mind one doctor said I'm too young for that too (I'm 45) so I'm waiting on a scan and mri to find the cause which one nurse at a walk in as my pain got so bad said they will probably find nothing it's just your age .
When I bring up my tube removal and the endo and ask if it could that growing elsewhere I get dismissed. Could they be right and its all in my head and just learn to cope with this new Cheryl !! I'm sick of myself and sure my husband is too !!
Just wanted some thoughts on if endo can grown further even if tubes have been removed, I get the feeling the doctors think that because they have it cant be that again!! Thanks from one confused woman
I’m so sorry you’re going through all this. You’re definitely not alone in having pain dismissed only to later have endometriosis confirmed. And just because you have endo removed from one spot doesn’t mean it can show up somewhere else. I’ve had endometriosis on my appendix, ovaries, outside my uterus, and under my uterus.
While I can’t diagnose the cause of your pain, endometriosis recurrence can definitely happen after surgery. But the kind of pain you’re talking about can also happen regardless of endo lesions. Personally, I have a lot of pain from scar tissue, pelvic floor tension, and likely nerve damage/inflammation. I also have a lot of hip and back pain and digestion issues unrelated to actual endo lesions.
There’s growing evidence that endometriosis is systemic inflammatory disease — meaning it affects your whole body on a cellular level. And I have a lot of symptoms that seem like arthritis but aren’t. Others in the endo community have also had trouble walking due to scar tissue or endometriosis found in areas around the nerves that go to the spine and leg, including myself. My past surgery to remove scar tissue helped with the leg pain, and my first OB-GYN refused to even look. I had to go to a second doctor who is an endometriosis specialist.
If possible, I would suggest making an appointment with someone who treats endometriosis a lot. The Nancy’s Nook Facebook Page may be a good place to start. I’ve also had good luck working with all kinds of physical therapists, including a spinal physical therapist, pelvic floor physical therapist, and sports physical therapist. They have all addressed issues that cause me pain when I walk and general back and leg pain. They might be able to offer you some relief while you work with other doctors to get to the bottom of what’s going on.
Please do not give up looking for answers!! - Keri (endometriosis.net team member)
First, I want to say I'm so sorry to hear you're going through that, and that your concerns have been dismissed by your current care team. I wanted to echo what Keri said and urge you to get a second opinion from an endo expert. As Keri mentioned, endo can absolutely recur after surgery and it can be found anywhere in the body. At 43, I was told the same things as you...that it could be IBS or arthritis, and that I was "too young." MRIs and ultrasounds came back clear. It turned out I had endo near my sacral nerve and it was causing me to lose mobility. I got excision surgery two years ago and I'm doing much better. Keep fighting, and know that it is not all in your head. ~Katrina, Endometriosis.net Advocate Thank you ladies , I guess I will have to wait for the scan they already booked in and go from there x thank you for supportive words and reaching out .
hi there. I wanted to just chime in quick as I can relate to so much you have said. My surgery in January declared I had Pelvic Inflammatory Disease and both of my tubes were damaged. It was so confusing to me because PID as people say, is mostly caused from an STI and just like you, I have been with my husband for numerous years and even before that I always had tests done to make sure I didn't ever have anything. But then I got to thinking and scaring myself with the, oh no what if I did have something that was missed and caused all of this damage? I am getting both of my tubes out the end of this month, so I don't know 100% yet what they are actually covered in, my guess is endometriosis though and adhesions. I am really interested to see what they will come back as when they send a biopsy out. Hearing yours was endo really gives me hope if I am being honest.
Anyways, I am really sorry that pain came back though shortly after. And now doctors don't seem to be helpful. Endometriosis can absolutely grow back in other places for sure. And after surgery, we always risk the chance of adhesions growing too. Which I have found to be more painful personally. It's almost like a never ending cycle it feels like. You remove one thing just for something other to grow back. It's almost like weeds in the yard, you spray the poison to kill them, but they always pop back up.
All of my scans never show anything. And I do know it's really hard for endo to show up on them. Especially if it's really deep. I agree with Keri's suggestion, looking into an endometriosis specialist if you haven't yet may be a great next step. But I will say this one thing, it is not in your head and you should not have to learn to live this way!! So keep on fighting and raising your voice dear warrior. And know, we are with you every step of the way. You are not alone here <3 Please keep us posted on how the scan goes and everything else. Sending you gentle hugs. -Kimberli (advocate)
Finally had my ultrasound scan which showed my ovaries have developed my fibroids, which my left is quiet large which I knew about but my right never had any. The doctor wants to put me on the pill for 3 months had he said will help reduce them both down . Asked if this will be linked to my swelling as I am getting so big every day and uncomfortable with sickness , he didn't really reply to that !! Thank you again for all replies, I'll keep you updated
