Gonapeptyl pain and 30 years in with Endo.

[Mistyone]

Hi all

Hope you are all doing well and getting ready for 2019 X.

First time posting so will try and keep it as short as I can (it's a lengthy story of 30+ years so will.keep to the basics 😁). Your posts have helped me immensely by just reading them, and wanted to post in hope of some collective advice or support.

I am 44, got diagnosed with endo 23 years ago. Also have andenomyosis, cysts, a fibroid, etc (same as a lot of women on here I imagine). Had 5 laparoscopies to remove endo (and of varying intensity) over the years, tried mirena, excisions, contraceptive pills, hormones, etc but nothing ever seems to work.

I'm now looking at hysterectomy (after being referred to BSGE). Gyny asked me to try Gonapeptyl with Tibilone HRT first, to see how I might cope with menopause and HRT (though I suspect I was already perimenopausal as periods have been all over in last year). I was reluctant (it's been offered before) as experience has taught me that my body and mind really don't get on with messing with hormones.

First month I took the Injection without Tibilone, then (5 weeks on) started the HRT as was beginning to feel rubbish.

So now I'm 3 months in (had 3 separate injections) and feel pretty awful. I had a back problem already (lower discs but I am guessing endo is also playing it's part here) and plantar fascitis (heels). However, now most of my body seems to hurt. Back pain gotten worse, hips ache, front thighs, ankles, knees feel like I have rubber bands round them, pelvis aches. Although it's not agony it is constant and I'm fed up. Also lost my libido, and feel fairly depressed with mood swings (according to my partner...though he has been very supportive).

I am sorry for the moan but wondered if others have had any similar experiences where there has been a light at the end of the tunnel? If this is what I can expect from a hysterectomy, and this would be how life would feel, I think I'd rather battle on with the endo (I've suffered since I was 13, so I'm 30 years in).

I keep reading about Gonapeptyl (quite horrible.stories with long lasting side effects) and wondered how long it will take for this to disappear from my system and return to normal...ish? I am back to Gyny in middle of January but am tempted to stop taking the Tibilone, as want a of the hormones out.

Any ideas on what I can do next, or any others who have experienced similar things?

I appreciate your support and wish you all a great new year x

[Northernmonkee1]

Regarding the plantar fasciitis I had it along with stage 4 endo and it's too much the endo nurse said to get it looked into. I went to a specialist physio and now wear insoles and the pain has gone. Any source of pain which can be got rid of !

30 years of endo blimey . I am taking the gonapeptyl, I am bad with hormones. The main things I'm finding is that my thinking and memory are affected. I have disturbed sleep etc. I haven't taken the HRT yet. The endo treatments are totally rubbish aren't they? Choosing endo or menopause. I am 45 and probably peri menopausal. The jab hasn't got rid of my pain and I am bleeding lots.

Gynae will consider surgery if it doesn't work but a surgical menopause cannot be reversed so it feels a bit scarey. I am soooo not suprised you feel depressed and really hope you get some support with your mood. Can you get better pain control and a physio referral ? I have got a pain clinic referral and I am hoping to try acupuncture.

The options are rubbish I really hope that the treatments improve in the future.

Take care and hope 2019 is a good one xxx

[Mistyone in reply to Northernmonkee1]

Hi there

I am sorry it has taken a while to reply and just a note to say I really appreciate your support.

Been back to the BSGE yesterday and they didn't seem to raise an eyebrow to the depression/low mood, as they seemed more concerned that i didn't have hot flushes?!? I would have happily swapped them for the host of more sinister side effects I experienced :)...... I have stopped the Tibilone (31st December for me) and I am starting to slowly feel more like me again. There doesn't seem to be an answer to when i will have a period again (I also think I was peri menopausal so who knows)

I will NEVER take those injections again and I am now left with the choice of a hysterectomy but leaving an ovary/two behind, or nothing. After all these years, the operations and numerous Gyn appointments, I'm not convinced that any of the doctors really know what they are doing with any of us. So think I'll wait and see what my body does first, look at balancing my diet the endo way (not sure i can give up red wine though) and see if I can help myself :).

Thanks again for your kind words and I really hope things are improving for you too.

p.s. on the subject of Plantar my podiatrist recommended Fit Flops and they do give me some relief, so worth a try

Take care

[Northernmonkee1 in reply to Mistyone]

Plantar stuff !!! I couldn't get on with fit flops (I've got funny feet) but the insoles I got from physio were fab. I went to the endo info day in Edinburgh and think they are now doing research but its in it's infancy so hope it will help women in the future. They acknowledged that the treatments are not great with signifcant side effects.

We all deserve better and we hope we all get it soon. Don't blame you about the red wine, I can't given up the sugar to be honest !! Hope things get better for you and good for you for taking control and doing what you feel is best. Take care xx