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Avatar universal

Is this really endometriosis?

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!
2 Responses
Avatar universal
Also, what does it mean that they removed lesions that looked like endometriosis but then they weren't (on pathology results)?
136956 tn?1425606272
Sorry that this took so long to get to. I often forget to come on here.

To answer some of your questions.

1)what does it mean that they removed lesions that looked like endometriosis but then they weren't (on pathology results)?

Do you mean they didn't test it?

2) Old endo could possibly mean endo that was not removed the first time?  I don't hear that being used so it is a weird term to use. I noticed that you said that your first surgery they "excised" the endo which is great as not many surgeons can do that and usually it is done by an Endo specialist. Is this the case? What about your second surgery?

3) After my ordeal with endo (My journals have my story-feel free to look around) I still to this day have left vaginal wall pain. To have sex is like having sandpaper inside. It has always been like this since I was 13. They could not find any endo at all and I still do not know what it is other than scar tissue. I talked to Dr. Wurn from Clear Passage at an event I was at years ago. He recommended using a vibrator (not turned on) and push it up against the wall to break up the scar tissue. I didn't end up trying it but that is an option. I would also look into treatment at clear passage. A little pricey but they are amazing. The best when it comes to Pelvic floor therapy. They do internal and external and I have known many who have gone to see them with amazing results. Just a thought.

4) After having surgery/Endo and childbirth it is quite possible you have pelvic floor dysfunction. Your pelvic floor could be clenching and then relaxed and going off all the time. Pelvic floor therapy is really good for this and I recommend it. As for it being associated with hormonal issues.... I am not sure about that.

It is possible you have scar tissue built up. In my journals I have something in there called "body rolling" This is very helpful to help break up the scar tissue. Painful sometimes but if you do it slow and consistently it could help you out alot.

Final thoughts are make sure you have all your records and scans from your surgeries and tests. This is imperative. Many miss vital information that is on one but not on another. I would recommend an endo specialist if you don't already have one as well.

Have you had a full thyroid panel done? Also to check for Hashimotos? Many women with Endo have thyroid issues so that is something to look into.

I hope that answered some of your questions.

Feel free to message me if you have anything else to add
:)
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