Is this really endometriosis?

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

Thanks in advance! 

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12 Replies

  • Posted

    Also, what does it mean that the pathology results showed the lesions (I assume looked like endometriosis hence why they were removed?) were not actually endometriosis? 
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  • Posted

    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 lucksmile

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    • Posted

      I don't mean to start a fight but all muscles are different in different people. Getting into anatomy, there are 3 kinds of muscle: smooth (intestines, stomach, ect) , cardiac (heart), and skeletal (only voluntary muscle). All muscles consist of fibres or more specifically cells in skeletal muscle the myofibril and myofilaments work together for movement.

      Also muscles can strain after a lot of use, I don't know if you've ever gone to the gym and then lift to hard (like my friend) to the point where your arms are stuck in lifting position for a while but that's basically what that is and it an occur everywhere when muscles do now get proper rest.

      Muscles also need lubrication to move, Arthritis is where the lubrication of your muscles (joints) deplete, it can occur anywhere.

      For some people some things will clear up right away and for others not. I've been to two physiotherapists one an athletic one who has helped famous athletes for my scoliosis and upon loosening up the tension in my spine I next had to build muscle, that took two years. The rule of thumb is they need to target the right area. My other one for my car accident had been in the practice for over 30 years

      Although massage therapists are not something I agree with, physiotherapists require medical schooling while masseuses don't, and they can cause more harm then good.

      So what I'm trying to say is you never know, no ones body is the same, one person may get the flu and go to work the next day while the other is in a hospital bed with the same one.

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    • Posted

      I've heard of endo turning into PCOS, I'm not sure what the symptoms are though so if they find levels of high testosterone I'd mention it. And if there's a thyroid probelm even the slightest bit and they tell you it's alright, push to get more testing done and more answers, maybe even ask to see an Endocrinologist.

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    • Posted

      Don't worry Hannah, I won't bite. In the States a massage therapist must be licensed after 2 years or more of training and they are capable of, for example, releasing a shoulder blade which has been compromised or bound by muscle spasm an inch away. Very different from masseuse who just, ahem, make us feel better one way or another. Insurance will cover massage therapist usually but not cover plain masseurs & masseuses.

      What I have learned in the decades since my accident is that different types or schools of physical therapy work better on different problems. If the physical therapist only believes in one type of therapy the patient may be SOL,

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    • Posted

      To continue ,, patient will be SOL if their injury technically needs myofascial therapy and therapist either isn't trained for that or doesn't believe in it so only uses hot-cold plus floor machines or only bands or only hydro etc. Same applies in reverse. Here in the States most insurance won't pay for endless PT so the therapists have had to become skilled at getting results in lesser periods than terms of years. Medicare and Medicaid require monthly PT rivals. If patient isn't showing improvement

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    • Posted

      Yikes! I need some on the spot therapy for eye-hand coordination this morning.

      Anyway I think that here physical therapists and massage therapists may have to work differently than in the UK. There are circumstances where therapy can go longer here, I had it for 6 months straight after a hand reconstruction. I don't know what would happen here on your scoliosis. I agree that your undertaking would take more than a few months.

      Yes, I do know about different kinds of muscles and what they do.;-)

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  • Posted

    Sounds like you've got a lot going on right now, Allie. Unfortunately, none of us are doctors so we can't really say what's going on with you. I can say that your history is very different from mine, but that doesn't mean you don't have endo.

    The ultimate diagnostic tool for at least 35 years has been the laparoscopy backed up by the pathologist's report on tissue samples removed during the lap. Your doc may have removed a number of samples. Some of those were not endometrial. Some of them were "old" endometriosis. Perhaps what that means is that you are - or were, it could change - one of those lucky souls in whom endo dies out with full-time pregnancies. Thus the sample of that tissue would be endometrial but not a vivid or living tissue. That is what I think they mean. Asking " your doc gets the correct answer.

    I had a vaginal pain for several years, on the left side when sitting. It was most noticeable when driving long distances. It finally went away a few years after my hysterectomy. Either I never asked a doc about it or I got an answer similar to what you've heard, that doc doesn't see any direct or immediate source for the pain.

    One thing I have had to learn the hard way is that for some things/pains, if there's no direct source and I respect the doc, then I'm going to stop worrying about it. That would not be the case with the periods you describe and the painful sex - I'd want an answer. But medicine is an art and the answers aren't always found, or we don't know the real question.

    That's no help to you! With all due respect to the particular experiences of the other poster in your thread, IMHO only crappy physical therapists and massage therapists require years to relax muscles. I had a terrible accident 26 years ago and have had intermittent therapy on different parts of my body at different times. So please don't look at those avenues as something that won't help you for years. It couldn't hurt to try.

    We're all pulling for you.

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