Long post sorry

[Fudge05]

I was officially diagnosed with endo 4 years ago after having my appendix removed and the surgeon seeing the issues at the same time. I have been fighting with doctors for over 20 years to believe that there was something wrong.

I have had 6 months of hormone injections that were amazing and sorted 90% of the problems out but I could only be on these for a short time as in still in my 30’s. I had the coil inserted which ended up imbedded in my cervix and removed after 3 months. New consultant took offer my care 3 months ago and straight away said he would do a hysterectomy as I have been through all the other options and it’s only made things worse. Looking at July next year due to the waiting lists. So in the meantime-

I had the coil removed 8 weeks ago and had a period after about 3 weeks. I had another one last week and it was hell! I had to use 3 night time towels at once and change them after about an hour. On the worst day I bled through 4 pairs of pjs. I have never experienced anything like it. Now approaching ovulation (when it has always been the worst pain) I have been unable to get out of bed. Morphine, hot water bottles and curled up crying. I am scared that now this is the new “normal” until I have my surgery. If it is then it will literally leave me house bound for 2 weeks every month and I can’t cope with that.

I have a 7x5cm fibroid on the back of my uterus and cysts on both ovaries.

sorry for the long rant but I’m drugged up to the eyeballs. Has anyone else experienced anything like this?

[I-dunno]

hi there

So sorry for your experience

I have suffered for many years with endometriosis but didn’t know and am currently about to have surgery to remove huge endometrioma.

I have had two children though my youngest is just turned 2.

I also have a connective tissue disorder ehlers danlos so I know about unbearable pain

And heavy meds

However I have only got this far in life because I did things naturally

My problems started massively last year after getting Covid and it triggers an inflammation response which made my endometriosis which was manageable to some level my ovulation pain is worst also

Feel immense pain through my back passage (sorry if too much info)

Thought I was going to die with the pain until I done some research

I had to do things naturally. You may not want to…

Biggest helper was hot Epsom salt bath with pink salts Himalayan - Epsom mostly Added some lavender oil and clary sage

Started taking high doses tumeric (cucurmin)the bioglan brand

Some bee propolis and enzyme n-acetyl cysteine

Obviously I’m not a doctor and you don’t have to take all of them

But I do believe in the body being given the chance to balance things the coil probably threw the hormones out of whack (heavy bleeding) should reduce after few cycles

I’ve never had a pill of any kind.

If I had officially had a diagnostic surgery to confirm endo I would have been more vigilant after Covid but having a baby and being under severe stress pressure didn’t help I didn’t really self care at all.

Please don’t panic I know you are worried and uncertain

Just try a few things out give yourself a little bit of time maybe two weeks try a few of these things see if they help.

The salts are high magnesium they absorb well through the skin and all around your stomach down there and back ect receives that relief

Taking orally doesn’t always digest well

And people with endometriosis normally suffer with their guts- ibs ect

So absorption through skin is amazing

Could also rub some frankincense oils essential on your tummy where pain is and lower back

Any other pain you can’t reach the water helps

Sorry if you think I’m insensitive I’m really not

I’ve been through a horrendous journey

But the doctors have not always helped well mostly not

I had to find another way out since they wasn’t supporting me

And some things are chronic

And they just like to take things out

Once it’s gone it’s gone

Endometriosis can still grow after a hysterectomy

So even I took a double take when I saw that

The body has to find its balance

If I didnt find out about this cyst when it was so large I would not have surgery I would have tried to shrink myself

But I’m doing the same routine and I’ve past that intense (feel like gonna die pain) and will just wait and see.

This is my first ever surgery so I hope it helps at least take out the huge growth then I will try and work on keeping endo at bay. They offered me coil, I’ve said no.

I’ve heard a lot of things about coil … sorry my post longer than yours

My baby is in my case hope I’ve not upset you.

Oh if things don’t help then pray for sooner surgery. Keep asking them

[Rainbow2468]

Hi I'm on prostrap because of the heavy bleeding i have two fibroids on one of my bleeds i lost half a stone in weight in one day. I would bleed for three weeks at a time, and flood randomly its just awful isn't it. Sending you a big hug x🤗

[Laura2306]

Hey,

You're not on your own. It can feel hugely isolating and frightening, espeically when you're having to advocate for your own health constantly. Constant bleeding causes you to lose your confidence, to feel you can't trust your own body and, for me, it has caused huge anxiety (never been a person worried about leaving the house but I'm having to force myself). And my god am I bored of wearing loose fit black trousers constantly, period pants, carrying spare underwear, about 50 tampons and 12 pads just to go to tesco!!!!

I'm not minimising it. You're not sleeping. You're bloomin exhausted. You're in permanent fight or flight and your anxiety is probably through the roof.

Be kind to yourself, take it easy on yourself. And don't feel guilty about crying xx

[Ouya]

i don’t understand why noone offered you excision surgery. Try to join Nancy’s Nook group on facebook. It has all the info and files about specialized excision surgeons. You’re not supposed to live like this. There is hope

[Username12345678]

Hi, sorry to hear that you are suffering. Your story sounds similar to mine although I was officially diagnosed at 40 after appendectomy. I also had no help from the coil!! It is possible to stay on the prostap injections for a longer period. I was on and off for 2.5 years. But there are risks so you need to be aware of them. I was also able to have injections while I awaited the hysterectomy. Perhaps you can ask for that option? I also wanted to add that for me, the hysterectomy has been the best thing I did. I wish I had done it sooner. Best of luck x