Frustrated

Hi, I am 32 and after a bit of miss management by my GP, I finally had a laparoscopy last March which showed I had endometriosis and several large cysts on my right ovary. The endometriosis was removed at the time of the operation and for a few months I felt some relief. I was diagnosed with endometriosis and Polysistic ovaries. I have been on 2 different pills since 2013 to regulate my non existant periods. Since starting the pill my periods have been horrible. I have to use extra thick sanitary towels and often still 'leak' despite wearing these. This last for a week, in which I feel like I want to hybernate.

After my op I was seen by gyne 3 months later who advised getting the merina coil fitted, which I did. Personally I found this painful and it just didn't feel 'right'. I bled and spotted for 6 weeks and at my check up I was told to take my Yasmin as well as having the coil as it could take up to 6 months to work properly. I still suffered really bad periods, despite having the coil and the pill and was in so much pain. Was seen by gyne again in December who basically told me I was having prostap injections for 3 months, then to have a break from everything for 3 months, see if the coil works and be reviewed again in June. I have had my 2nd injection and I am really struggling. My lower back, neck and shoulders are really sore and I have woken up with intense pain over my shoulder blades. I haven't been sleeping very well, have been very emotional (im not normally a crier) and have had hot flushes and night sweats. As well as a lot of period like ovary pain.

Just feel like I am going from one treatment to another with no actual relief. As I have no children they won't remove my bad ovary. Have been on various pain killers from co-codamol, tramadol to amitriptiline. Have fantastic support from my amazing girlfriend, who I owe so much to. Work is a struggle as I do on call work, so can be in work at all hours. They have not been very helpful with me and have offered no support. Have only had a week off and that was after my op.

Has the prostrap inj worked for other people? I had my reservations about it before taking it. Im still not convinced it will work for me. Be interested in hearing other peoples thoughts and experiences about it.

Apologies for my war and peace essay!

Sarah

3 Replies

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  • That's terrible! I had to take the pills for my period and pain. Before my hysterectomy. Then they gave me the Lupron Depo shots... To treat my Endometriosis. I bled very bad, too. I know how you feel about just wanting to hibernate. Because of that. They had to stop mine, medically. They had to put me in a post menopause medical state. To stop my bleeding. I still had breakthrough bleeding at first. Had to take all kinds of hormone therapy. And ended up not being able to take any. My Dr. didn't feel there was any other option, but surgery. They'd already tried everything else. I'm having problems again. A Dr. recently re-diagnosed me with Endometriosis again. And it's very frustrating. And I'm as sick as before. And hurt as bad, too. After a recent exam... I've hardly gotten any relief. I have to find someone that can help me again. The way my Dr. did a long time ago. It's not funny. And I didn't appreciate them letting me suffer with this again. And try to diagnose me for something else it wasn't. When all my symptoms and pain is the same. Some DR's. Don't seem to understand when some do.

  • Sounds like you are having a tough time... All this stuff just wears you down, and it's hard when you don't look ill!

    My thoughts are that if your one ovary is that bad you should consider removal. "They" will let you... You just need to present to them in the right mindset.

    Think carefully about the risk of having a poor quality of life with the "possibility" of having children. If your ovary is that bad - which is sounds like it is, it won't work anyway.

    Good luck!

    LY

  • Thank you for your replies. It's good to know that I am not alone.

    Went to see the Dr again today as my joints have been really sore, but just got told that's normal. Now on the correct dose of dihydrocodine, so hopefully the pain will be better managed. (Thank god for hot water bottles).

    I made my feelings very clear that I want surgery but they insisted that I try the injections first. Which I can understand as it is a major operation. But just feel like I'm not being listened to. Currently unable to self certify for time off work, so need to see the Dr for days off at s time. Lad at work broke his foot and got a week off straight way.

    Thank you for the support and reassurance that I am not going crazy.

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