How to cope?

My symptoms began truly way back at 8 year old, my first period landed me in hospital. I suffered massive traumas, abuses at the hands of several pervert men, abuses from parents, bullied etc... how i made it this far is beyond me.

Edit: These abuses were in childhood and are for context that i suffered the first 16 years and tried to rebuild and now i am left suffering medically due to ignorance, incompetence, lack of research, funding or whatever the many reasons us women are spoon fed. Please don’t worry.

I had my son at 16, 3 days after having him i was at home with him and the after birth bleeding intensified, massive clots, dizziness. My womb donor was useless and refused to drive me to hospital, so i rang the doctor who was about to send a helicopter.. at this point my womb donor gave in.

I was given mefenamic acid & Tranexamic acid and sent on my way... i never new either was for pain as it never even helped with pain. I suffered every month with pain.. usually i was on the pill but I’d always have extremely bad period pains and heavy bleeding. The same thing happened after my daughter was born at 18. I went on the pill after she was born again. But was always crippled by pain on pill free week. Fast forward 5 years later long after my husband had a vasectomy, i came off the pill. This was the down fall.

The pain began intensifying every month, switching sides, lower back pain, coccyx pain etc.. handed pills and sent on my way. By 26 the pain was at ovulation and period.. by 30 i couldn’t even handle the pain it was so intense. I found the doctor on call begging, she said that it wasn’t anything to worry about and just a bad period.. i cried 10 days straight. The next month August 2017 i rang again doctor on call when it got to much, again she didn’t want to see me or send me to a & e. That same week i went to see a locum doctor i was a state, in tears and pain. She hoped me up on the bed, felt my tummy and felt the cyst on my ovary... sent straight to a & e and no one bothered there arse.. no scans nothing and treated appallingly. Back to Dr how was furious, sent straight for ultrasound this time.. 7cm Endometrioma found.. classic sign of stage 3/4 endo. I was referred to Gynae September 2017, seen gynae for the first time Jan 2018.. no surgery, left in pain until Nov 19... at this point he didn’t even do surgery he freed some adhesions and couldn’t continue as he was under qualified and i had DIE, oblitered POD, ovarys stuck to bowel etc etc... he urgently referred me to MRI and another specialist.. Jan 20 MRI showed i was covered in endo, new Endometrioma growing, enlarged left ovary, rectum stuck, womb pulled and stuck, ovary in bowel and 5mm DIE on bowel wall..

Due to Familial history and mental health, i refuse LUPRON!! I want a hysterectomy 23 years i have been plagued with no help. My so called specialist has phoned and informed me. A. Lupron will cure all until surgery (pushing positives, asking no health questions... no bone scans.. in fact he glossed over any negatives.. dismissed my number of new symptoms, the length of my pain, my pain relief usage etc.

B. Told me i will be at risk of a stoma due to the 5mm DIE

C. It will be 12-18 months before surgery

So, 23 years of pain and suffering and 2017-2020 of knowing i need surgery and no one actually doing anything really about it.. now it will be 2021 or 2022 before i can get back to work. I graduated late at 32 and left my job due to sickness and my degree.. a year prior.. i cannot work in a months long pain, vomiting and toilet bursts..!!

I cannot afford to go private, i live where excision isn’t the norm and i doubt the GP could refer me across to England or Such.

I am lost and broken, so very tired of spending days in bed unable to do things. I used to run, be cheery, and try to see the positives even after everything I’d been through. Being along with no family isn’t great but i have my own to worry about now and they don’t deserve this either.

I use every holistic method i can, herbal, i try it all.. i am tired of sub par medications and lack of care for Endometriosis patients!! My life feels absolutely ruined..

Advice, strength, anything really?

[Linley]

Hello Jabr007

I can't get past reading your first paragraph. If you have been abused by "pervert men" then the authorities in Northern Ireland(read your other post) should be informed. The UK NHS helps all and you stand a better chance in NI than you do in England at the mo. So please seek help. Big hug🤗

[Hidden in reply to Linley]

Thank you for your concern, this was historical and only for context for my past to future and fight in a sense. I have updated the post to reflect this. Unfortunately, NHS NI hasn’t been great for many of us ladies and the lucky few that can afford private go to England. We don’t have an endometriosis specialist or clinic that we are sent to, and excision is like hens teeth. I am still waiting for my *endo removal surgery from 2017. My post was for endo frustrations, and struggling with delays.

[thara9643]

Your whole post makes me scared. Please inform or alert the police in Northern Ireland asap, this is frankly a crime. Do not delay.

[Hidden in reply to thara9643]

Thank you for your concern but this was a long time ago, and i have updated the post to reflect it was for context.

[dolly26]

Hi Jabr007

I have to agree with the other ladies you need to report all the abuse to the psni.

If you want to message me about the endometriosis side of things your more than welcome (I am from N.I as well)

[Hidden in reply to dolly26]

Thank you for your concern, but these were historical abuses and only used in context to my suffering and fight. I have updated the post.

[Hidden]

The abuses have been reported many years ago, but was used as an overview of facing horrific issues during the onset of my gynaecology issues. I am still overcoming this even though my GP refuses to send me to psychiatrist or psychologist to repair the mindset sometimes left behind. But i have a strong structure without my parents or extended family.. who frankly were destructive.

I am more pissed that i overcome or am overcoming all the poop from my past and yet i am being disregarded with health as i have done for many years even after complaints.. I am more annoyed that i have two amazing teenagers and we like to do things together as a family and I struggle due to constant pain, nausea or bowel issues.

Not to mention being told i am an urgent case to be left from 2017 too 2021 at this rate before i even have a lesion removed.

I appreciate your concern girls but the abuse is past by 17 years since i fled with my son from the home and i have since obtained a degree and raised a perfect family. Xx

[Whoisthis]

Just want to send you massive hugs and to say that I fully understand the pain you are living with. The only way to speed this up is to go privately I’m talking to so many endo women on Instagram at the moment and everyone in the NHS UK system is delayed by around 12 months, the only way to skip is going to be to pay? Could you crowed fund, as relatives, credit cards?? Anything to get you out of the misery.

Pm me if you can? If you want any surgeon details.