At my wit’s end

[WhatToDo77]

Hi - I was diagnosed with endo 15yrs ago after the birth of our first child - I’ve had two rounds of diothermie since then because any hormonal treatment sets off massive migraine with Todd’s Paralysis (like having a stroke). The last diothermie treatment I had ended with a 2 minute cardiac arrest due to sever vagel response - that was two years ago and my pain is worse than ever - urination/ opening my bowel, passing wind - all too painful in days before, during and after my periods. Periods have now become so bad with pain I find it hard to get up, walk and sit down so I just want to stay still in a ball on my bed.

I have nerve pain in my left leg and bum cheek all the time - something I’ve attributed to a slipped disc but the doctor has told me this could also be connected to my endo!

I saw a new gynea a month ago and asked for more diothermie as that has always given me some respite but she refused due to my cardiac arrest last time - she said my vagel response is triggered by gas being pumped into my abdomen and anything being inserted into my cervix, she then went on to say she wants to try the marina coil as would rather risk migraines than death!!! In saying that, she wants to do it under a general with the cardio team there...so why not just do the diothermie???!!

I’ve decided I’ve had enough, I’m nearly 39, I have two beautiful children and a loving husband - who puts up with the lack of sex because it’s too damn painful - I just want it out, I want a hysterectomy. I asked for this and my Gynea said that I probably can’t have HRT because of my migraine issue.

I don’t know where to turn or what to do. Things are so bad I had to approach my (male/young) boss and ask if I can work from home during my periods because of the pain it was humiliating.

I’m now going to go privately and see if I can get a hysterectomy but talk to them about leaving my ovaries in so I don’t need HRT - would that still help me?

I’m at my wits end - so I’ve found this website to see if anyone else is feeling like me. I just want to cry all the time, I dread my periods

Thank yoj

[Kaiyya]

Hi I’m

So sorry to hear how this is affecting you

I had severe endo and horrendous periods so they have put me on the depo injection

Prostrap it stops the periods and drys up the womb and helps heal the endo

It’s suppose to be every 3 months for 1 yr bit I’ve had it 2 plus yrs and periods have stopped

Endo has all but gone

No pain no bloating nothing

My life style has gone back to normal and the cosy hubby nights -) as well

I’m back to my old self and don’t dread every month

My other gp wanted to take me of but my other GP there said why bother it’s made me better stopped the hazel of pains and me st the docters every month and stopped the cost to the nhs for treatment they said it will bring on the menopause as I’m 50, so once I’ve had that my periods will stop anyway so it’s the best thing I’ve ever taken

Yes people worry about it

Yes u can put a bit of weight on

Yes it takes till the 3 rd injection to work 100%

BUT IT workks amazingly

Just ask can you have it

They offered me a coil I said no

They offered me hysterectomy I said no

I wanted to just lie die and die with the horrendous pains

And periods that lasted for 7 weeks and had no life serioulsy could shower get dressed and shower again after flooding 2 mins later

Horrendous

I hope you get sorted and hope my reply has helped you a little take care xx

[WhatToDo77 in reply to Kaiyya]

Thank you so much for replying - I’m sure my consultant will bring this up when I see him this week - although it’s not the route I want to take.

At least I can have the convo with him.

Thanks again

[AllthatGlitters]

Hi I wouldn’t worry about you having approached your younger boss, at least you have discussed the reasons why you need to work from home. You have an illness and are doing your best to keep a job, work, be a mum and a wife. Well done! Don’t be so hard on yourself 💕

As you mentioned hysterectomy I know that’s a massive operation however given your age and the fact that you have 2 children already, if it’s what you want 100% then I would push for it. Be clear in what you are saying and hope that you are taken seriously. Why should you go private? Keep your money for you & your family as I am sure you pay enough taxes to help contribute & fund the NHS x

[WhatToDo77 in reply to AllthatGlitters]

Thank you for the reply, I really appreciate it.

My private health insurance has agreed to cover me (thank you work benefits) so I’m seeing a top gynaecologists on Tuesday at the private hospital in our village. I’ve written down everything I want to talk to him about and all the questions I have. I’ve listed all my symtpoms and the pain levels for each - first time I’ve got a straight line of 10s!!

Turns out my private gynaecologist is the chap who initially diagnosed me all those years ago so that’s good.

I almost feel excited About the appointment. I won’t be rushed, I won’t be rail-roaded into some treatment I don’t want, he will listen and advise and I am praying to god (although I not religious) he agrees to the hysterectomy given my age and history. I’ll let you know how it goes