Constant Pain for months!

[Caitlinsian]

Hi girls, sorry this might be a bit of a long post but i’m getting desperate and really interested to see if anyone has had a similar experience with their endo.

***Trigger warning just in case as talking about a lot and TMI***

I have suspected endo and when i was younger i always had excruciating period pains and they were alway really heavy, then I was put on the combined pill to manage these. 3 years ago i collapsed at work with suspected appendicitis which following a laparoscopy, turned out to be a burst cyst, after the op i had awful pains 24/7 stabbing pains and the worst cramping, really bad pain during and after sex and when needing the toilet and passing bowel movements, also vomiting daily and massive loss of appetite among other things, i had loads of tests and scans to find out what was wrong and tried cutting out all kinds of foods which made no difference, i have been on every pain medication under the sun and had another exploratory lap about 10months later which didnt show anything and i was fobbed off with IBS. These pains were constant and lasted 10months straight, i was bed bound for most of that time and ended up having to leave my job and drop out of college. I was eventually put on the mini pill and took it back to back which was amazing and basically stopped all the pains very quickly other than the odd flare up and a few triggers like needing the toilet and sex or stress. About 6 weeks ago all the pains came back overnight and haven’t gone away again. I have had a scan which showed that my left ovary is attached to my uterus which they think is whats causing the pain but it’s odd that the mini pill has stopped managing the pain. Im now waiting for a gyne referral and hopefully another lap. Has anyone else had constant pain that has lasted considerable amount of time rather than just around their periods? Im still off work because of this pain, its unbearable,but i’ve never known anyone else to experience it like this! If anyone has any advice or similar experience please let me know!

I could say way more about what investigations i’ve had and symtoms but this post is long enough!

Thanks for reading if you made it this far!🤗❤️

[Wifespain]

Hey caitlin ..sorry to hear about your suffering. My wife have this horrible pain for last 6 weeks, she is been offsick all these time. I personally spoke to her gyno but seems like all they care about advising on taking pain killers I joined this forum to find out more about this devil endo. Hope you start feeling better soon

[Lindle]

You have described a very typical history of a young woman being put on the pill for heavy painful periods early on with bowel related symptoms being put down to IBS. Many women have laps by general gynaecologists that don't look thoroughly enough in the right places only to be told they don't have endo that just perpetuates the diagnostic delay. Medical treatment only addresses symptoms not progression of disease and often when a diagnosis is finally made the endo can be deep.

The most common location for endo, including when it is deep, is behind the uterus. Adhesions/fibrosis caused by endo stick the back of the cervix to the rectum and this predominantly affects the left side, with the left ovary getting stuck to it. This is called rectovaginal endo.

Typical symptoms are chronic pelvic pain with pain with bowel movements, pain with/after sex, lower back pain which is often referred to the left thigh/hip/leg. With your history and symptoms you need investigating by a specialist in endo with more detailed scans. It is vital that another lap in general gynaecology isn't done.

[Maya23 in reply to Lindle]

Thanks for this information. I have pain on left side of pelvis which goes down my left thigh into my hip. I’ve had some 10/10 pain episodes of this recently. I had my first lap 2 years ago (I’m now 48) when I got diagnosed by a general gynaecologist. A year later I had endometrial ablation to stop my heavy periods and sterilisation. Adhesions were spotted during that procedure on the left side but not treated. I think it is triggered by bowl movements. Do you think I need to find a specialist endo gynaecologist?

[Lindle in reply to Maya23]

Without a doubt. Deep endo is often described by general gynaecologists as 'just adhesions' when deep endo can be centimetres beneath unseen. Will pm you.