Need help : Hi I'm new to this :) I've been... - Endometriosis UK

Endometriosis UK

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Amanda-jill26 profile image
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Hi I'm new to this :) I've been suffering from endo for the past 6 yrs I'm about to start my second try of artificial menopause & hrt in a few days thlo this time they are trying prostap injections instead of zoladex, has anyone else who has had prostap injections or currently having them any handy advice or tips to help me threw the next few months as I'm quite anxious and nervous about it all :(

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Amanda-jill26
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abbie103 profile image
abbie103

I have stage 4 endo and this is my 2nd time on prostap, both time it's been brilliant for the pain but both times I've had some side effects, the first time I was on prostap I suffered with hot flushes this time I'm getting a few headaches and irritable at night but 2 weeks down the line I'm getting used to my body change and taking each day as it comes, some people say they would never go back on prostap but I find it fine and if your suffering bad with your pain I would highly recommend prostap will do u fine, it's a lovely break from the pain don't worry about it to much u learn to deal with the little side effects u have xxx

Amanda-jill26 profile image
Amanda-jill26 in reply toabbie103

Hi abbe I'm glad to hear it's working good for you :) when I was on the zoladex for 6 months it worked while I was on it but a few months later it all came back and had to get another laporscopic op a year and half ago I was fine for a yr then started getting real bad lower back and hip pain then the abdominal pain started real bad a few months ago, I'm hoping this prostap helps with the pain cause it's horrible :( are you taking hrt aswel? Xxx

abbie103 profile image
abbie103 in reply toAmanda-jill26

No I've been put on prostap as part of my Ivf cycle, I've had 2 laps to remove endo my overies was stuck together and my bowel had a cyst on it I've been trying to conceive for 7 years with no luck, apparently success rate is higher in people with endo when they are put on prostap first, the problem is endo will always come bak there is no cute for it it's just about keeping it under control, do you have children? My advice would be try not to have to much surgery especially if your wanting children as surgery can cause scaring that can make it harder to conceive, since I had my last lap my endo pains have got better but I still do have the odd bad months I have a cyst on my ovary again but they think this is okay to leave until after I've done Ivf, where abouts is your endo xxx

Amanda-jill26 profile image
Amanda-jill26 in reply toabbie103

I've a 10 yr daughter I had her at 16 unplanned, we've been trying for 6 yrs with no joy, yeah I don't really want another op tbh cause I've had 2 already, also tried loads different hormone pills etc but never helps with the pain, docs think my tubes are blocked so when the fertility team see me which is a yr waiting list :( it's more than likely going to be ivf for me too but they want to try this prostap first to help with the pain xxx

abbie103 profile image
abbie103 in reply toAmanda-jill26

I think prostap will defo help with the pain it's worked with me both times so fingers crossed it will work for u as we'll, I'm nearly 27 and I'm like u I've been pregnant before but first pregnancy I was like you I was young I had a termination an then I fell pregnant again a year later and had a misscarrage and I've not been pregnant since, I punish myself for the termination but at the time I wasn't ready to be a mum and I didn't know that endo was going to show it's face a year later, I suffered really bad with my endo really bad not long after my miscarriage it took them nearly 2 years do diagnose me and by this time my endo was servere, I tried to conceive naturally after I had my 4 hour surgery but not look I want to try and have a baby before endo gets any worse, the pain I get with it is horrible my work don't really understand they think I'm just having period pains an being soft as you know this isn't the case the pain is horrible my mate who has endo says the pains arnt far off labour, it's played a huge part in my life endo it's made things so hard for me, are they giving you 3 month prostap xxxx

Amanda-jill26 profile image
Amanda-jill26 in reply toabbie103

I completely understand everything you just said, I thank my stars I have my wee girl I believe everything happens for a reason like.. before I was diagnosed I was in so much pain and so unwell I lost my job cause I wasn't fit enough I took a couple of years to get myself back on my feet properly and got myself a good job which I've been in for 3 yrs now I worked so hard to get it and now this year I've had to take 2 months off on sick cause I'm so bad I ended up in hospital recently I couldn't even stand the pain was so severe :( I just don't want to lose this job too cause of this... it's so frustrating as I'm sure you know all to well.. Yeah 3 months then a check up see how it went. Ohh and my endo is in my womb & round my ovarys xxx

abbie103 profile image
abbie103

Good for you with your job I think its hard for any endo sufferer to keep their job as we all know we need more time off than most people. I have endo on the ovaries i bet it causes alot of pain having endo in your womb, How are the ops going on you are they managing to remove most of the endo or are they struggling, its a horrible thing its defo ruined a lot of my life plans, I wanted to be a midwife but thats a no go now...xxx how old was you when you was diagnosed? xxx

Amanda-jill26 profile image
Amanda-jill26

I totally agree with you there most people don't understand endo which makes it hard, my ops went okay 1st one they burned it out and 2nd they cut it out but just keeps regrowing again :( I was diagnosed about 5 6 yrs ago. It's really affected my life aswel it's horrible, got the prostap injection there this morning so fingers crossed it helps cause last night & this morning the pain has been horrific :( do you have pain most days??xxx

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