Endometriosis, adenomyosis, prostap, add back???

Hi I'm new to this site, after being under the gynae consultant for over 3 years things seem little clearer so I thought I'd come on hear and tell my story and hopefully get some advice.

My periods started when I was 9yo and have always been horrendous, painful and heavy. I don't ever recall having an easy time of the month. When I was 29, a year after my DD was born I had a tubal litigation. Sometime the following year I started suffering from an achey lower abdomen, varying from mild to severe, sometimes going down my legs and into my hips. Periods got increasingly worse and numerous other hormonal symptoms, bloating, headaches, some facial hair, frequency of urination, stress incontinence, upset digestive system, sore breasts, PMT. Some of these I'd experienced before and but all more noticeable.

GP tested for perimenopause, but thought not by blood results. Consultant referred for US, nothing seen. Given mefanaemic and traxenemic acid, no help with blood loss but made it possible to deal with pain. Consultant told me I was too fat, lose weight, lost 2 stone, symptoms especially the pain continually getting worse. Bleeding through clothes at work, when taking kids out, bloating so I looked pregnant, heavy abdomen etc etc. Pain getting really bad on any exercise. Elevated CA125 at 105 November last year, repeat test at 45, no further tests.

Feb this year had laparoscopic procedure, no endo scene a few adhesions removed not extensive connecting left tube, bowel and peritoneum.

Three weeks post op pain back with avengence, urgent referral back to consultant, tried antibiotics to check not got an infection as my left tube looked weird apparently.

And so it continues, pain not as continuous as before but that's partly cause I avoid too much exertion as this really sets pain off at any time of the month. This has resulted in weight gain as not as active as before which is what happened previously.

Saw different consultant last tues, he said I needed to try the Prostap to either confirm or dismiss endo, if confirmed then a hysterectomy, if not who know??

I was very much against the Prostap idea but decided it was worth trying as opposed to have unnecessary

surgery. Had the jab then and also on small dose of Tibolone for side effects. So far so good, I've been very anxious about the side effects of the hormone therapy but haven't really had any major ones, bit spaced out, little headaches, feeling a little nauseous. The worst thing being my worrying about getting the side effects.

Well from what I've read and been told by doc the prostap takes varying amounts of time to work, thought I would try some proper exercise Friday night and did a Karate class, which is new to me and had a surprisingly high impact warm up, no pain whatsoever during or since. Could the Prostap work that quickly, am I imagining it?

Period is due tues/weds so it will be interesting to see if I get it.

If the pain and period don't occur can I presume that I have endo or adenomyosis?

Any thoughts, advice welcome, as very confused and slightly anxious

K

5 Replies

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  • Forgot to mention the exhaustion, I'm always tired, sleep loads and get colds frequently, I'm not anaemic as was tested recently.

  • hi hun sorry to hear about your problems. I have had endo for 5 years or I was diagnosed then I have has all the mixed contriseptives prostap ati inflamerties sorry my speelings bad lol 2 laparoscopies I have had enough prostap worked for me for 2 months then I started getting really bad head aches I had my last laparoscopie in march now I have demanded they give me a hysterectomy if feels like that's my last resort I have 2 kids so im ok there not happy but that's the only thing left I think I have that in November I hope it works I hope that prostap continues to work for u good luck x

  • Oh and im 32 years old that's y they don't want to do it x

  • Hi this year I started on Prostap monthly injection, and noticed a huge difference in my pain, I managed to wean myself off the Oxycodone and tramadol was kept to a minimum, it did make me really tired but this wasn't a bad thing for me as sleep was an issue before....sadly they would only prescribe it for 6 months.

    I had my last Prostap jab on 18th July 2013 and am waiting to see a consultant on Mon 9th Sept..

    The pain has increased significantly again and I am now back on serious pain relief, so I am hoping I can go back on the prostap ASAP as I found it did work for me....Good luck with it all and keep in touch as to how your doing with it...x

  • Not so good now, got my period which was due, loads of pain and the bleeding is excessive been through about 10 towels in 24 hours and so bloated, I look 6 months pregnant...is this bleeding normal? it's even worse than my usual period :-(

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