Is this really endometriosis or something else?


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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2 Replies

  • Heres my reply from the patient site:

    Looking from a muscular stand point, I myself and going to physiotherapy after a car accident for whiplash and scoliosis. One of the major things with physiotherapy is it takes a lot of time for the muscles to relax, and in most cases more then 1 set of muscles is involved (if you have whiplash it travels from your next to your back) so after you loosen up 1 you have to loosen the next 1. A muscle could take anywhere from 3 months or a few years to loosen, this is often affected by age. However you should start to feel pain alleviate itself after a while even the slightest bit if it is muscle pain.

    Also athritis can be a cause of muscle pain.

    Have you tried a muscle relaxant? Rolex(I think that's what it's called) or perscription. If pain clears up from taking 1 you'll probably be able to tell whether or not it's a muscle problem. (Muscle relaxants make you dizzy)

    Ok so that's kinda what I learned from asking my physiotherapist and being in bio this year being I'm 17.

    In my experience with endo (not dignosed but told by gyn) I get shooting pains in the cervix, and my peranuim during, and a week after and before my period. For pelvic pain I've found it helps to put a heating pad on my lower back.

    Also if pelvic floor muscles are kegels they may be tight because your holding in your bladder too often, sometimes without realizing it.

    I think you should try to get the hormone test done if you can and also ask for an X-ray if you think it may be muscle related.

    Best of luck:)

  • I would take a look at the posts on here by 'Lindle'. There is very little about endo that she doesn't know, and is she is a fount of advice, inspiration, facts and guidance.

    From all you have said, I would imagine that this could well be endo. Also, you have a confirmed history of endometriosis, so the GPs and medics should be taking that angle much more seriously.

    Endo can only be detected, properly, by a laparoscopy: tiny viewing tubes inserted into the abdominal cavity, to look at the entire outside of the uterus, fallopian tubes, ovaries ... and all the walls of the abdominal cavity, outsides of the bowel, intestines, diaphragm and elsewhere. Endometrial tissues can be found on any or all of these surfaces, and only specialist endometriosis gynaecologists know enough to examine all of the cavities in this space, and can recognise all the different appearances of different forms of old and new endo tissue. These 'endo specialists' are also trained and highly skilled in the surgical techniques used to remove all the diffent types of endo, in whatever awkward place it happens to be. General gyneas do not have these skills. There is a medical protocol in place (in the UK) which means that people with your history, symptoms and concerns should be referred to a 'Specialist Endo Centre'. Look at Lindle's posts for a link to such centres, and read her other posts for more info on this.

    I hope this helps.

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