Medication: Hello all! I am trying to... - Endometriosis UK

Endometriosis UK

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Medication

Atyler profile image
10 Replies

Hello all!

I am trying to decide what medication would be best for preventing or slowing down the growth of my endometriosis. My doctor has recommend one that will stop everything entirely- basically putting me into menopause... I am 29 years old. I would take the medication for 6 months to see if anything has improved. Any suggestions or advice at all? My husband and I would really like to start a family soon. So we are trying to think of what is best in the long run!

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Atyler profile image
Atyler
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10 Replies
AbraW profile image
AbraW

I'd look into serrapeptase taken with "natto". At has a lot of hype and studies clinical studies of removing cysts and dead protein Scar Tissue Etc check it out for yourself it might be worth a try!

AllWeNeedIsluv profile image
AllWeNeedIsluv

I second AbraW that's what I'm using hoping it will help xx

ccsmith profile image
ccsmith

Sounds like he wants you to have zoladex which is what I'm on (3 weeks now). I was really anxious about it when you read all the posts on here 😱 My GP was lovely when I went to him in panic. He advised it switches of my ovaries and stops the endo! I'm very severe so I'm not 100% convinced but it's the only thing I haven't tried apart from radical surgery. It does have interesting side effects which are exhausting but if it works 🎉

I've been told my endo can be switched off anything up to a few years. That may help if your trying for a baby but you won't be able to start until after the 6 months and I'm not sure how quickly your ovaries kick back in! I was on Northisterone for a bit and my friend is taking it at a low dose until she's ready to start trying.

One thing I have learnt is that we all seem to react to drugs differently. So there is no clear cut answer, it's a case of try it and see. All medications can be stopped at any time!!

Good Luck it's tough making these decisions x

Heloo85 profile image
Heloo85

It depends what works for you. My endo remains active no matter what i try. And ive tried everything. Im down to 2 options. Ivf (cant get on nhs) or a pill thats not licenced for Endometriosis yet but my consultant has promised it. Endo is hit and miss. Sometimes the pill back to back will control it, other times zoladex will be needed and sometimes like me your endo will remain active no matter what you try! Hope you find something that works

Summer_3 profile image
Summer_3 in reply toHeloo85

Out of curiosity, are you able to say what the pill is that’s not licensed for endometriosis yet? X

Heloo85 profile image
Heloo85 in reply toSummer_3

Aint got a clue what theyre called. They are estrogen inhibitors. Act a bit like zoladex but instead of stopping the production of estrogen, which doesnt always work because endo can make its own, it stops endo from being able to uptake estrogen so it effectively starves it. I heard about it years ago so know a bit about it, but actually it is now available, but only for those whos endometriosis is severe and doesnt respond to other treatment. Its supposed to be miraculous, but i dont know. It, like zoladex is a cancer treatment, so obviously quite potent stuff and as far as im aware comes with menopause side effects xx

Summer_3 profile image
Summer_3 in reply toHeloo85

Thank you for getting back to me, seems like the doctors are trying to find something that will Work then! When you do try it, please will you message me as I am interested with how it works, any benefits or negative feedback. I feel like the more I know about it all the better prepared I am. Even though everything seems to work differently for the each person. I am on the prostap injection while I wait for my laparoscopy. Luckily I have just had my last one as it seems to not help at all and even make me worse for a week after each injection:/ xx

Heloo85 profile image
Heloo85 in reply toSummer_3

I will certainly keep you posted! I know its a pain. Ive tried everything me so far and its not at all responded. Surgery lasted weeks. My Gynae wont even operate again as he doesnt see the point. I will try this drug and im glad theyre looking for something that works, but it always seems theres a price to pay if it does work, or it doesnt. Ive just finished a second pointless course of Zoladex and my god, side effects are shocking! Im not even slightly better after trying for last 2 years to treat it, in fact probably worse! What a horrible, ridiculous disease xx

Arclight profile image
Arclight

Hi, like the other lovely ladies have said it all works differently in all of us. For me personally, I have had alot of surgeries but they do nothing to help as my endo grows back super quick but zolladex has allowed me to live! It should hopefully shrink your endo back so you can then try for a baby.

Hope this helps ☺

Atyler profile image
Atyler

Thank you ladies!

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