Hi there - 1st post and I'll try and not bore you all to tears. I'm now 42 and I've suffered pelvic issues since I started my period at 13, I always had quite heavy periods and increasingly every month the pain would get worse. By age 14 I was passing out with pain, hyperventilating and constantly being sick - after being treated for a kidney infection for a week in hospital I had an ultrasound (living in a small town the machine visited once a week!) and it revealed I had a twisted cyst on my right ovary. I had emergency open surgery to remove this. From that point things went downhill, I had another large cyst on my other ovary which required open surgery, and then severe adhesions that caused my organs to stick together, my urethra to twist and block, my bowel and uterus stuck together 'squishing' my left ovary so it disappeared - several laps later the doctors did what they could but they did advise me if I wanted a baby to make it happen asap. By this time I was 23, and with my now husband so we tried but it didn't happen. Endometriosis wasn't really a commonly discussed or widely know disease at this time, and this was definitely reflected in the treatment I received and almost first mention of it was a letter I received from a surgeon saying he operated on stage 4 endo. From now I would get constant Pelvic Inflammatory Disease episodes and I've lost count the amount of times I was admitted to hospital for treatment and antibiotics. Unfortunately, I had one of these episode whilst working away from home and the treatment I received at the local hospital was AWFUL, I could cry thinking about it. My mum and other half had to come and get me and I was discharged without having had any antibiotics.
Fast forward a couple of weeks, and I started to bleed strange grouped together clots, and the pain was bad. My temperature was high, I was freezing but it was nearly Christmas so I just ignored it and tried to get on - I didn't know that this was insides not coping and the PID killing off any live ovarian tissue I had left. Within 2 months, I was in full blown menopause with the most awful sweats, flushes, bone pain, depression - it was awful. When my gynae affirmed menopause, he put me on HRT for my bones as I was only 26 - within 2 weeks my head felt better but I was devastated this had happened and so was my other half.
Time went on and we kind of accepted the fact that we wouldn't have children, we were advised to go down the egg donor route and ask my sister, but she's a fruitloop so that was a no and the donor list - well there weren't any. It wasn't until I had a nearly fatal Hep A encounter I got a dog, and we decided to 'close' the maybe baby chapter by visiting the GCRM in Glasgow - they told me with the right donor we could have a baby no problem, and it would be best to go to an advanced clinic abroad so we did, and within 6 months, a few flights, 2 visits and 1st try I was pregnant. Words still fail me, regardless of what has happened to me I still feel like the luckiest woman alive to have my girl (now 10) and a partner (now husband) who has stuck by me through everything.
I had my girl at 32, lasted 6 months breastfeeding but then had to start my HRT again as the familiar flush feeling was coming back. All was good in the hood until a couple of years back. I've a bad back anyway with sticky out discs that pinch on nerves but it was the endo pain I was feeling again. The usual wait, scan etc and it's confirmed - adhesions and endo is back. I've been referred to a team in Edinburgh but there's quite a waiting list.
I feel like a lot of my family have wrote this off and have practically got the bunting out because I've been unwell for some time there's finally a diagnosis, and it's not fatal (not my husband, he's being a rock as usual). It's like I've dealt with it before without moaning and still smiling so I'll do it again, they don't ask how I feel, I'm expected to carry on as normal and if not I'm in a 'mood', I feel like they're sick listening to it and I believe they have probably said this to each other. They don't know the pain, the worry, the stress, the anxiety, the depression the everything that goes along with having this re-diagnosed.
I am always a cup half full kind of person, and keep up that persona but today ladies I am running on empty. I'm sad. I'm lonely. I'm teary. I want to get back to normal.
Has anyone else had endo at a young age for it to come back?
If you're still reading, thanks for letting me offload, it's quite a saga and it's probably no wonder folk get fed up listening!
XX
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