Just after some advice

Hi all! I'm hoping for some advice as I don't know where to turn. In short

*Referred to Gyne after months of pains and bleeding between cycles

*Ultrasound showed right ovary fused to uterus and Gyne suspected Endo

*Lap showns no Endo but multiple Abdominal Adhesions. Ovaries weren't visualised as "couldn't get camera through adhesions"

*Gyne prescribed 50mg Provera for 8 weeks as thinks I'm producing too much hormone. Was told periods would stop and I wouldn't ovulate; we're currently trying for a family so not best option but I'll try anything to stop the pain

*Constant pain has stopped, waves of pain are more intense, frequent and painful than before

*Period came in August (3 weeks after starting on Provera) and was like every other though 2 days after I started spotting again and am still going 16 days later

*Called Gyne office today to see if I can bring my appointment forward (it's 22nd of this month) but there are no clinics at all until then. I asked what I'm supposed to do and I was told visit my GP for "advice"

My GP referred me to them cos he didn't know what was wrong with me. I have no standard or quality of life at moment and feel like I'm being fobbed off (we move to Germany in November)

I'm so miserable. I feel like no one is listening or are even bothered; even my mother tells me to "stop being mardy" and makes comments about the pain of child birth etc. I don't even know if I can have children even though my tubes are clear after having the dye test done during Lap.

I was told when given the Provera if it doesn't work the next step is surgery for the adhesions. My adhesions aren't in my area of pain so how will that help? I don't want to go back there angry and frustrated, I want to ask the right questions but what more can I ask or can be done. He said in a very matter of fact way that if the drugs don't work and surgery doesn't, the only way to be pain free is a hysterectomy!! I'm 31 and childless! Surely there are other options?

Please can some help with questions I can ask them and/what I can push for?

Thanks in advance, Sarah x

4 Replies

  • I'm sorry you feel do bad. I haven't really got any advice for you but just wanted to comment in what your mother said.. I had a baby with no pain relief and he back to back and I tell you what it was a breeze compared to endo!! You are strong! Don't feel your pains are insignificant, they are! They are bloody awful. When you do have a baby it will be easy!!

  • Thanks Katie; just hearing that has made me feel better lol

  • Sorry you're feeling so awful. It is a big change to your hormones so it won't be immediate or without pain, everything has to work out what it's doing. I haven't had provera but I had periods on zoladex. And within the first month you won't know if it's helping, it's only lucky sods who get things better straight away. I know it's hard but keep going. You'll have a fairer view of everything soon. Best thing to do now is to see your GP for some pain meds and possibly talk through any concerns about provera, he/she will be able to discuss that with you.

    I don't know anything about adhesions that aren't endo. That's confusing.

    Also I've heard you can pay a bit extra to have better care than you get on your standard ehic with just a bit more money which would be worth looking into as this is an ongoing issue. I would get doctors notes all together too to give to doctors/gynaes abroad.

    I wish I could be more help but I don't know what the answers are I'm sorry. I am making babies til they are happy to perform a oophrectomy. It's weird knowing that I'll be pain free once I've had my babies. That's my hope anyway. I would maybe talk to the doc about babies and how long you have to wait after provera to start trying. Have you been trying long?

    Best of luck xxx

  • GPs are a bit useless when it comes to endometriosis - mine told me to have babies now and when I said I wasn't ready, she told me you never really are! I think that is the least helpful comment I've ever received regarding this illness. People who don't have it, don't understand though - so that is probably why your mum says what she says.

    My Gyne has suggested Zoladex, which prevents the production of certain types of hormones in the body, in this case, it'll stop releasing eggs and tricking your body into [permanent/mock] menopause. Its a monthly injection that can be taken with HRT.

    I do have endo and adenomyosis, neither of which are being lessened by operations or medicine, so this is my last result before having children (which I am not ready for yet) or a hysterectomy (which I am definitely not ready for yet). It might be worth enquiring when you do get to see your gyne?

    Best of luck.

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