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Endometriosis UK
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What options do I have left?

Good evening everyone,

So after many emails and phone calls to PALS, they have finally given me an appointment for this Friday compared to waiting till July for my follow up regarding Zoladex treatment. I have been struggling the last 3 months on this injection so today I decided to stop anyways I am dreading the appointment as my gynae is a bit useless.

In the last year or so, I have tried: The mini pill, the combined pill, prostrap (I don't know how to spell it), zoladex, naproxen, tranexamic acid, paracetamol, ibuprofen.

Hormone treatments do not agree with my body and painkillers have no effect. As I am only 20, they obviously won't perform a hysterectomy but I feel like I am stuck for options as I don't want the coil or anything like that. I am waiting for my periods to come back and see what they are like but I am worried the endo will come back and I'll be back to square one.

Does anyone know what my gynae may suggest now or what I could mention to him on Friday?

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From what I have read (currently reading The Doctor Will See You Now which I RECOMMEND) a hysterectomy will not solve the endo issue. You’re very young and if you choose that route, you’ll not be able to have any children you may want in the future. You don’t have to have the coil - I was asked if I wanted it and said no. Have you had a lap? If not, perhaps you could ask for one?

Good luck xx

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Hey, yeah I had a lap last year to remove endo and a cyst, forgot to mention that in my question haha xx

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I was scared off the Mirena IUD as well (the internet can scare you off anything) but pain wise and cycle wise it really helped.....I am very sensitive to hormones.....but I guess the very low dose delivered in the uterus didn’t bother me.

Unfortunately I have a lot of fibroids so my uterus is a funny lumpy mess and I couldn’t keep either of the two they put in place.

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Yeah I just don’t like the idea of something being put up there haha.

I feel like I’m stuck for options as my body doesn’t like hormone treatments xxx

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Hysterectomy does not cure endo!!! I'm glad you are not considering this option and you never should. Excision surgery is your best bet (make sure it is EXCISION, not another 'technique' - cauterizing doesn't work).

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Apparently he did excision surgery but my doctor is now doubting my consultant over whether he actually removed it or not xx

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I had an inexperienced surgery the first time around that didn't know how to properly treat endo and he missed a wack load of it. I'm going in this time with an endo specialist. The first guy didn't even know that endo could cause scar tissue and he thought I had an STD.... eye roll

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The amount of times I’ve been told it’s an STD despite clear results is ridiculous haha. I’m just dreading what he’s going to say tomorrow as hormone treatments don’t agree with me so I’m kinda stuck for options.

I really wish I could be referred to someone else but I don’t know if they will xx

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Speak to your family doctor and tell them that you want a second opinion! You have that right :)

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Hi hun, I really didn’t like the idea of the coil- my body didn’t agree with hormones and felt weird about having something up there but I was just so desperate for something that might help that I went with a merina on the advice of one of the few understanding doctors i’ve seen. Omg, best decision I ever made. I’m 22 an had it inserted when I was 20, it’s painful for 10 mins but it has improved my Endo symptoms 10 fold (more than when I had a lap for removal) and no hormone effects aside from slightly longer PMS. Completely respect your choice not to have one just thought i’d share my experience if case it was helpful for you at all. Best of luck, I hope you find something that works for you love xxx

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