Suspected Endometriosis - Please help!

Hi, I am 19 years old and I have finally been referred to a gynaecologist after 18 months with symptoms, but they have gotten so bad that I have had to intermit from uni (should be starting my second year now). The doctors (once they realised I wasn't going away and couldn't be fobbed off) are now convinced its endo.

Here are my symptoms:

-18 months ago periods became more frequent ( every two weeks, sometimes every five days but this varies massively)

-Pelvic pain (including vagina, rectum, particularly my left ovary area)

-Fluctuating appetite, for weeks I want to eat nothing then will suddenly want lots of chocolate and greasy food

-Pain during intercourse or orgasm alone

-Bleeding between periods, bloody discharge

-Breast tenderness

-Referred pain in my legs, back, shoulders occasionally

-Nausea with occasional vomiting

-Extreme fatigue (I think the sleep cycle of a sloth looks pretty good right now)

-Acid reflux/atypical burping after eating just a single biscuit

-Headaches and vertigo

-Alternating upset stomach and extreme constipation (I feel constipated permanently, even if I've been several times that day (TMI?))

-Painful bowel movements

Does this match your experiences with endo? And based on this, if endo is confirmed is it likely that my bowel is affected (either directly or has been fused etc.)? Its just that the NHS is so frustrating, and my mum wants me to see a specialist privately because it has interfered with my studies so much, but I don't want to go to a specialist that isn't experienced in surgery on the bowel as I know it can be a risky procedure if so. Is it likely that I should expect to have endo on the bowel based on my symptoms, or are these normal for people with minimal or mild endometriosis?

Also, I had an ultrasound and no cysts were found, should I accept this? I didn't have a transvaginal ultrasound because they said there was 'no need'.

Thank you for reading, please let me know your thoughts. From the help of this site I am only just coming to realise that it isn't in my head or a teenage mood, and I cannot believe how useful and comforting the info is on here.

Rhi x

3 Replies

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  • Hello rhi. Sorry to hear that you have been being fobbed off so much. Bit quite of a few of your symptoms are the exact same as mine and I have endo. I had to keep going to my gyni and not taking no for abit answer to get my op and to get diagnosed although before my op he said I don't except to find anything and when he did I think his ego was bruised because he ate lots of humble pie! I have the same constipation issue all the time and I have endo on my bowel. Also on my bladder, ovaries, womb, falopian tubes, pouch of dougless. Or how ever you spell it! I just think you need to keep pushing. The last 9 years I havent actually met a doctor or gyni that know much about endo. You will probably have the same problem as I did as you are so young they won't think you can have endo just as they did with me. Just keep pushing because you know your body. Sorry to go on! Hope this helped and your not ever alone in this feeling! Xxxx

  • Thank you so much for your reply. It is so frustrating, and I am sorry to hear that you have such problematic symptoms, and have had problems with doctors for nearly a decade. It does seem based on my symptoms that the bowel is involved because of all of the digestion problems, but when I look at symptoms online they are all listed together with other symptoms, and it makes it impossible to estimate what stage I might have, and where. I guess I am just going overboard with wanting to know exactly what to expect, and what questions I should be asking a specialist. Thank you again, its nice to know that I am not the only one, even though I don't wish this on any other person (If that makes sense).

  • You not silly for wanting to know everything that's going on. I was so frustrated for years until I got a complete diagnosis and I felt happy without being fobbed off. This is probably the most frustrating thing that I have going on because you can never find anyone who is actually specialized in endo and know what they are talking about. Just don't give up and keep pushing for help! Xx