Endometriosis UK
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What next after prostap injections?

Hi, I have had 6 months worth of prostap injections and they worked wonders I felt amazing. But now I'm back to suffering with no help from my gynecologist. Too young for a hysterectomy.

Has any one else had a similar experience and if so what happened next?

I am now on the implant and have just started taking a mini pill as well.

Thanks for reading

5 Replies
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Hi hun,

I am in the exact same boat as you, 22, had 9 months of prostap and too young for hyster. I have the mirena coil and have had 2 excision surgeries but nothing has helped apart from the prostap injections. Tbh, I don't know what is the next step for Me, probably just put up with it until I'm of age to have a hysterectomy xx

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I had a hysterectomy aged just turned 28 You shouldnt be assessed on age. (I had been under my specialist private consultant a year and a half previous to this)

It is dependant on medical history.

Your preference for your future.

How you tolerate medications.

I went private after years of being ignored.

My consultant gave me prostap on nhs with the view of me asking for a full hysterectomy and oopherectomy after a discussion on what i could have.

I am now 29 and alhough i am on estrogen only hrt this is only due to the age factor with relation to the bodies need for estrogen for muscle heat and bone continued development.

The nhs is unlikely to allow a hysterectomy for a young person due to many reasons. Both financially and also due to the fact that it takes away your ability to have children that at a later date you may regret.

Privately you can make this decision with a specialist consultant as you are then taking responsibility for your own decisions. A person is unlikely to spend out jousands of pounds for a half thought out idea....of so they believe (this is debatable in certain things....look at bad plastic surgery)

However this is unfair on those unable to finance a decision they feel just as strongly about as a person paying private.

Maybe as some consultants work for both private and nhs is maybe an idea to seek such a consultant and pay for the 1st initial consultation and see if you can be under their care on nhs...you will have to wait longer and may have to go through more tests and medication than the private root but it maybe an option.

If you want to talk feel free to message.

I can understand your frustration, we all feel similarly on here regarding the teeatment of such cases and the disease itself.

Stay strong.x

Reply

Thanks for your reply.

Are you happier now you've had a hysterectomy?

My husband and I are looking to go private if I don't have any luck at my next appointment with my gynecologist. Still awaiting appointment!

I have managed to have my family with the help of a lovely gynecologist but unfortunately I moved away and had to start again with my new gynecologist who isn't very nice. I only got give prostap as I ended up in a&e with pain so bad I was passing out and a hubby who didn't know what to do (bless him) and it was a different consultant who prescribed it. He offered to take me on but as I'm still under my original gynecologist I cannot swap until I get discharged! So I've been told!

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I am very happy indeed.

I have such an improoved quality of life now. It has been marvellous and my consultant was amazing.

I had the full hysterectomy with cervix removed and oopherectomy.

I have no pain. No periods. No missed days. No ibs related issues.

When i was at my worse i was described as a woman going through extremely bad labour. I felt constantly sick (a problem when medication requires you to eat before taking) had pain in back, thighs, stomache. Could black out due yo pain. Had fever. Was sweating. I had to have hotwater bottle st boiling to the point where i was burning my skin AND heat pad on max. I had heavy clots. Pain after emptying bladder due to release of pressure. My bowel movements were bad.

I was given different meds over the years..paracetamol...like that would work😑 then ibuprofen...then tranexmatic acid and mefanamic acid. Then mycrogynum tri cycle...which i was taken of because of a bleed/clot behind eye.

Then it was codydramol....yuck and nooooo.

The 1st gynaecologist privately i saw didnt really listen to me...just read what the gp said...the gp wasnt helpful btw. She siad i couldnt have it as she could "move my womb" and just told me to go on the coil (where due to my badly tilted womb and pain in having smears i would need to be knocked out to have inserted). I refused and went elsewhere.

2nd consultant was amazing. He did take the gp letter but said it wasnt necessary and asked ME what eas happening etc. He gave me options and left the decision uo to me....pending the prostap injections.

When he actually went in he found it millimetres from the bowel. I had just escaped it attatching and penetrating this which would have made it more difficult.. but not impossible to remove (if they have to cut out over a certain amount there us the need for a colostomy bag for a while at the very least...this turns quite a few women off...it didnt with me. I was prepared for it if it was necessary. This also highlighted to the consultant how badly i was in pain.) It was also covering an my back and up the right fallopian tube starting onto the ovary. The left hadnt progressed as far but over time the situation would have gotten much worse.

Is there a way you can discharge yourself? Then you can go privately whereever and to whatever consultant you want.

X

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Oh and apparently my sense of humour has improved lol. X

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