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Endometriosis UK
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Has anyone else had this?

Hi all, ive tried to find someone who an tell me they've experienced this and so far I've not had anyone :-( I have no children. I was initially told I have stage 2 endo so it might have progressed since then. I take Morphine (mst) for pain and im in the process of reducing because Im that sleepy. It is effective but I have no life so I am trying to just cope with the pain. I had a trial of prostap injections a couple of years ago and my periods returned to normal. Over the past 4 months I have had only one period. I am very concerned. I have all the swelling of the abdo, chocolate cravings and period pain every day but nothing arrives. I was scanned a while back and was told that I had a amall cyst on the right ovary, but the consultant said they were not concerned at all.

I don't really know what to do, and more so what it could be.

If there is anyone who can help me I would be greatful xxc

4 Replies

Hi I used to be a 28 day cycle but since Iv had cyst on right ovary period coming every 35 days I was dignosed with aheasions in pouch of Douglas and endo in my womb but Iv been getting worse over last few months but I had a son 2 years ago had no symptoms but then all returned when I had my son I think once u stop having injections it can take about 4 months for periods to go back to normal I would maybe talk to your gp or gynaecology hope this helps and u feel better soon


Hi - I had a look through your posts and it seems clear you need to be seen by a specialist in endo. A scan will give little indication of what is going on. I know you depend heavily on pain medication so must be in a lot of pain without them. Can you describe the pain you have when not on meds? Also can you remember where you had endo when you were first diagnosed and where in the UK are you as options can vary.


Hi I don't know if I replied to this! So sorry! I was diagnosed at Birmingham heartlands hospital under miss irani. The psin o initially had was during intercourse. A couple of times it was like radiating pain if I recall. The final stage that took me to the docs was that I had so much pain after intercourse radiating in my womb and up into my abdo and down my legs that I nearly called an ambulance. Later that week I passed a skin like lining. I asked the gp if was normal to hurt during sex and that was that. Nothing showed on ultrasound so I had lap. Found endo on ovaries, ureters and in womb. The pain is petty much constant and can vary to dull aching to sharp stabbibg pains. I passed another lot of lining in 2010 after calling 999 for excruciating pain. My main worry atm is my absence of periods. Im really scared and concerned about this as I've not heads many people who have this due to endo and om scared its not endo. I do have a cyst on my right ovary found at the start of the year. She was not concerned at all by this.

I hope this is the info you wanted. Thanks for your interest xxx


Hi - lack of periods could be due to several things. One is PCOS but they should have detected that at a scan so presumably it can be ruled out. Another is hypothyroidism which seems to be quite common with endo so it would be worth having your thyroid function checked. The most likely cause is an imbalance of hormones that is typical of endo and you are likely to have more severe endo than has been assumed. For you to have it on your ureters and for you to have pain on sex and pain all the time I think you probably have it in the rectovaginal area that is most commonly missed in general gynaecology. In any event you need to be seen by a specialist in endo who can look into everything. Click on my name and have a look at my post on how to find a specialist and the one on rectovaginal endo. Private message me if you have any problems getting a referral. x


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