Sick of this disease!!!: I'm so fed up with... - Endometriosis UK

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Sick of this disease!!!

elektra4 profile image
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I'm so fed up with this flipping disease. Ive been stuck in PMT for 2 weeks now. Still no period. I'm bedridden with pre-period pain. I dread to think how this cycle is going to go if the pre pain is anything to go by. I have been under alot of stress so that's probably affected it. I just want it to happen now so I can get on with life. Even tho just for a few weeks until the next dreaded curse. I've got stabbing pain in my right ovary and feel exhausted. It's really disrupting my life.

Went to see my gynae again. All they want is for me to try hormonal tablets but I'm so dead against them..I don't want weight gain and depression. I don't understand why it's so difficult to give me another laporoscopy. I've only ever had one. That was 4 years ago. It worked so well I was symptom free for 3 years. I know it's what is needed again but the NHS is in a real state of crisis. Finally they agreed to refer me to the surgeon. Hopefully I'm getting somewhere.

Just so sick of being ill. I'm getting that desperate I might have to consider hormonal treatments. Has anyone had any success with desogestrel or prostrap injections? Or utrogestan ? The side effects all sound hideous. Just need to know if they provide any benefit at all.

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elektra4
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Starry profile image
Starry

If it were me, I would would try other options before the Gnrh, it is an extremely powerful prostate cancer drug and has the worst side effects Profile. I had a severe adverse reaction to it and had all sorts of cognitive issues like memory loss

That said some women thrive on it because we are all unique and our physiology and quite possibly our endo type is completely different.

Everything I tried so far made me depressed or worsened my symptoms. If I were to try anything again it would be utrogestran as it's meant to be bioidentical

elektra4 profile image
elektra4 in reply toStarry

Thanks for your message. Yes I'm tempted to try the utrogestan as it's bioidentical and meant to have less side effects but not sure if the NHS will prescribe it. Thanks for your info on how the Gnrh affected you. Sounds awful.

I've been doing alot of research on the mirena coil. As it's a very localised release of progestins it seems to have some good success but as you say we are all very individual and will react differently to everything.

Has anyone on here had any success with the mirena coil? Or bad symptoms? I'm most worried about depression, weight gain and decreased sex drive.

Starry profile image
Starry in reply toelektra4

Thanks it was horrific, but that was just my experience and I am the type of person who reacts badly to medication in general.

I did try the mirena and it very nearly worked so I'd say its well worth a try and you can take it out any time. I was told it stops periods for a third, leaves light spotting with a third and does nothing for a third.

My experience: I bled very heavily for 5 weeks which really wasn't fun (get an iron supplement) but then my periods stops like a tap which was really nice.I think a lot of horror stories are mostly from ladies who didn't give it long enough.

I had mine after an ovarian cyst treatment and it did cause a niggly mild pelvic pain. I gave it 5 months to settle and be sure it wasn't the surgery but eventually took it out as I decided the trade off of daily mild pelvic pain for monthly awful pain wasn't right for me. My only other side effect was a slight low mood. So very close. Perhaps if I'd not had the ovary treatment it would have sat comfortably and worked a treat as it does for some ladies.

Hope this helps.

elektra4 profile image
elektra4 in reply toStarry

Ok great. It's good to get lots of experiences with it. Was. The heavy bleeding in the first five weeks?

I have such light cycles, only bleed fir one day two tops. Which I think isn't right anyways. But then get the most hideous pain..before during and after. Hoping it can help with that. I do get easily depressed tho which is why I'm apprehensive about any hormonal treatment.

Thanks for your experience.

Starry profile image
Starry in reply toelektra4

Yes, just the first five, just over a month, and I don't normally have heavy bleeding so I was a bit worried.

I suffer badly from depression too, which is why I'm off everything now and decided to accept the risk of recurrence. But I only noticed I'd been low coming off and tbf there was an overlap with the zoladex and the effects of the two combined isn't a fair test.

It does just seem to be a suck it and see thing which is frustrating and slow. All you can do is go in order of increasing potentency and give each a fair 3 or 4 months.

Good luck whatever you decide xxx

PS if you try utrogestan do let me know how you get on. Xx

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