I'm new here.. Seeking advice: Hi, where to... - Endometriosis UK

Endometriosis UK

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I'm new here.. Seeking advice

poodlesof profile image
4 Replies

Hi, where to begin! I am getting to the point where I am in so much pain and am getting very worried about my health.

I first properly noticed that something wasn't right about 3/4 years ago (I am 22) I have never had regular periods, but didn't see this as a big issue and just dealt with it. About 3/4 years ago intercourse became increasingly painful and I would bleed each time, I went through bouts of bleeding for months to not bleeding for long periods of time, I went to my GP who initially thought endo/PCOS as there is a family history. Had an ultrasound which was clear and was told I was fine and that 'once I had children these things will clear up'.

About another year back and forth to doctors and eventually got referred to gyno at Bupa. Had another ultrasound which was clear and examination etc and was told by gyno to steer clear of contraception as she believed this was causing the bleeding/pain and to keep a diary. Came off contraception 2 and a bit years ago, bleeding during intercourse stopped but pain persisted and irregular periods persisted.

A while later I went to GP after not having a period for 5 months who said she wasn't interested unless I had missed 6 months of periods (lovely woman), had my period the next month so just carried on, never really suffered much period pain before this but my period pain started to get horrendous when I did have a period. Decided after a year of no contraception to give it another go, started on the pill and the bleeding during intercourse returned almost instantly so came off it straight away. That was about 14/15 months ago. Haven't used contraception since.

January 2017 - hadn't had period since November, was in extreme pain one evening out of nowhere which resulted in a huge bleed that night (wasn't a period as just lasted a few hours) and was quite traumatic. Since then about every 6 weeks, I wake up in the morning with a niggling pain in my right hip, by the end of the day the pain has spread across the right of my abdomen and is just horrendous, it goes right up my ribs and across to my navel, I can hardly move and its very tender to touch on the right of my navel. This only lasts a day then the pain goes. I just had this happen on Saturday for roughly the third time since January. Attempted intercourse the first time I suffered this pain and it was extremely painful. I find it painful to urinate in my lower abdomen and have suffered with diarrhoea/bleeding also and suffer a lot of hip and rib pain daily, also very bloated constantly :(((

I feel I am getting nowhere with GP's etc as I am getting dismissed and being told that once I have babies my body will sort itself out and that's what normally happens with these things but I can't face any more pain! Does this sound like it could be endo ladies??

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poodlesof
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4 Replies
Ria29 profile image
Ria29

Endo can't be seen on an ultrasound, only cysts, I got told by the ultrasound tech that it wasn't endo and if it was it wasn't very bad, had a laparoscopy a week later and was stage 4. It does sound like something is wrong and if it hasn't been picked up from any other methods then a laparoscopy and hysteroscopy should really be preformed, I would go back to gyno, I'm sorry if I've not been much help but I do hope that you feel better and get the answers you need x x

kerryann80 profile image
kerryann80

Oh I really feel for you, I was fobbed off too, for about 20 years. I was told I had I.B.S, P.I.D, was tested for S.T.Is numerous times although I have been with the same man for 20yrs and insisted I didn't need it, 4 ultrasounds, blood tests, more blood tests and I was even told by a male doctor that it was 'normal'😕 all this before I was eventually referred to a gynae, after pushing for it. Convinced the gynae that I needed a Laparoscopy, she tried to talk me out of it, tried to just get my coil changed and "see how it goes" I refused, told her I know I have reason enough to insist on surgery! I had my Laparoscopy 3wks ago, endo was found at the back of my uterus, it was excised and I'm feeling a little better every day. Don't let the docs fob you off, insist that you know that what you are feeling is not normal and you want a diagnostic Laparoscopy

amy-28 profile image
amy-28

Sorry your dealing with this, endo can't really be seen on a scan I'm afraid unless they can see endometrimma cysts on there. You would need a laparoscopy to hopefully get some answers. I know how frustrating it it when the drs just fob you off and don't listen to you it's awful how long it takes us endo women to get anywhere near getting a diagnosis. Sending love feel free to message if you need to xx

seg86 profile image
seg86

It took me nine years to get diagnosed, so I totally sympathise. You need to get insistent. I recommend you go to the doc with a list of your endo symptoms. There are lots of checklists you can find. Make sure your GP has had endo cases in the past. I know none of us should have to, but you may need to insist your way to a gynaecologist referral and then insist you need a lap to diagnose. Stay strong, I know it's tough. Remember if you feel fobbed off by the doc, you can always request someone else.

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