Endometriosis, pelvic floor or hormones?

Hello,

I apologise if this is long but I would really appreciate some advice about what could be the cause of my current pain issues.

10 years ago (mid 20s) I had a laparoscopy after experiencing some minor mid cycle spotting and minor/occasional pain in one spot (left wall of vagina) during sex, also left side pain in the area of my ovary. My periods were neither heavy nor particularly painful. Endometriosis was suspected and I was referred to a gynaecologist specialising in this condition. During the procedure he excised tissue and the pathology results showed that only 2 of the 6 samples showed evidence of endometriosis (cervix and right pelvic side wall - positive. Bladder peritomeum, cul se sac, left pelvic side wall, uterosacral ligament - all neg). He also removed a cervical polyp that was benign and the records show some minor adhesions removed. He didn't feel what he saw explained my symptoms but had ruled out anything else nasty, so we left it at that. The left sided vaginal wall pain remained with sex occasionally and the spotting (very light) occurred sporadically. I went on to conceived two children over the next 7 seven years without issue.

About 18 months ago I started to have upper left abdominal (not pelvic) pain and the spotting because a little more frequent. My periods, still not too painful, were becoming a little longer with three or four days of spotting before the proper period began (not heavy). I tried to go back on the pill (had been off mostly for the last 6 years due to pregnancy and breastfeeding but suffered extreme nausea every time I took it. After three different pills and a week of anti nausea meds I was finally able to take it. To me, with the spotting, this felt like a hormone issue as I was also having some minor hair loss (like after pregnancy) and acne. Also, when I skipped the sugar pills, I still got my period anyway, although lightly. Drs didn't agree it was a hormone issue and wouldn't test. Ultrasound (abdominal and pelvic) showed nothing, blood tests showed only anaemia so I was referred to a gynaecologist (different one because I had since moved).

Shortly before this appointment I started having mild left side vaginal pain ALL THE TIME. It just randomly started one day, I didn't have my period. It was worse when sitting and would go away when I exercised or lay down. It wasn't worse when I had my period. The new gyno thought endometriosis right away but I can't help but feel that me mentioning the previous lap 10 years ago sent him into that thinking too prematurely. He could see no problem inside the vagina, STD and UTI tests (it felt like a UTI - burning on left side inside vagina) were neg. He wanted to do a lap which showed only "small amounts of old endometriosis", a lot of adhesions (which he released, maybe from C-sction?) and some general inflammation. He was perplexed as he also didn't feel what he saw explained by symptoms.

The pain became worse, esp when sitting, and spread to perineum and into my bottom and left hip. I usually woke up pain free and it got worse during the day. He ordered a pelvic MRI as he wondered if there could be a spot of endometriosis inside the wall of the vagina, and also wondered if it could be a nerve problem (Pudendal Neuralgia) and wanted to rule out anything else, but the MRI showed nothing at all. Apparently this doesn't really rule out a nerve problem as they often don't show up so he wanted me to take all sorts of nerve drugs which I wasn't able to tolerate.

I got a second opinion, and this dr just did a pelvic and looked at the results of the lap and MRI from the other dr and said he thought he could feel some scar tissue inside the vagina that could be causing nerve pain. I asked if he meant scar tissue from childbirth and he said yes. I questioned this as my only vaginal delivery had been years earlier so it all seemed a bit odd esp as no one else had felt this scar tissue. He also asked if I was an anxious person, which I am and said that he often finds psychological counselling can eliminate unexplained pelvic pain. He was worried I would be offended by this but I was not as this more recent pain all started at a very stressful time and if this is just stress induced, then that is great!

I then saw a pelvic floor pysio who said my muscles on the left side were rock hard but she wan't very experienced and when I asked if the tight muscles were the cause of the issue or a result of an issue, she wasn't sure. She is the only one in my area. Stretching exercises eliminate the pain but it returns shortly after. Apparently my symptoms fit exactly with pelvic floor hypertension (top tight pelvic floor due to tension and chronic holding of those muscles) but no one has confidence in that diagnosis because I have the finding of 'minor amount of endometriosis' and the adhesions thrown in. Just the way it all suddenly started one day, makes me think it is muscular.

So I would appreciate any comments you care to make. Specifically, I have a few questions:

1) My current symptoms are left side vaginal pain, that spreads into my bottom and hip. Periods are no especially painful (a few pain killers on one or two day only and able to get on with everything) nor heavy, just long (10 days 3 days spotting at start and then at end and four day normal period in middle). No urinary or bowel pain. The vaginal pain has been worse during my periods for the last few months but it wasn't in the beginning. Does this really sound like it is caused by endometriosis? I'm 35.Pain medications don't change the pain, which is about a 3/10 and while I can get out and get things done, is very upsetting because I don't know the cause and can't have sex etc. I've had it for nearly a year.

2) What does 'old' endometirosis mean?

3) What does it mean that they removed a lot of lesions they thought were endometriosis but pathology showed they weren't?

4) Any info you could share about hormone imbalance or pelvic floor muscle pain?

Thanks in advance!

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4 Replies

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  • Could be pudendal nerve from tight muscles. Have your ilioinguinal iliohypogastric nerve checked as well, maybe a nerve block?

  • I'm having a nerve test done for pudendal nerve, hurts my butt big time, and left leg, and foot

  • You could try Amy Stein's book "healing pelvic pain". If it helps to stretch the muscles then her book could be very helpful as it goes through a stretching and massaging routine daily that is specifically geared for pelvic muscles.

  • Research pelvic congestive syndrome. I think I have this. Pain not too bad in the mornings, gets worse throughout the day. Sorry to sound crude but it feels like a knife is being shoved in. It's worse when I sit down and if I move too quickly. It's all the time except when I have a period. I don't get spotting like you though. I'm waiting for a laparoscopy to check it out. It's hard to diagnose and not many gynaecologists look for it. Especially as you are laying down having the lap the veins aren't as full. Have you been offered another endometrial ablation in case it is endo, which can't be seen on a scan only through lap? Good luck and I hope this helps.

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