Hi everyone,
I've been reading bits on this website since september, when I was diagnosed with endo, and it's been a massive help to me but this week I'm actually about at the end of my tether and decided it might help me to actually get involved rather than just read!
So, last year I was in a lot of pain and had constant bleeding for about 8 weeks. They found an ovarian cyst so they referred me to a gynae. He left it for a few weeks as they often disappear, but in month it grew from 5 cm to 7 or 8 so he decided to operate. I had a laporoscopy to remove it. All straight forward so far! Was told at the time that the cyst had attached itself to my bowel but theyd removed it. Again, I didnt see much of a problem because in my mind everything was fixed. My follow up appoinment came through (2 months later!!) where he told me I had endo, that one of my fallopian tubes was very scarred and had been attached to my pelvic wall and that I needed to go on a treatment program. So, in October I started taking Prostap and Livial. I was pretty upset because I don;t have any children yet and would love to have them one day but at this point the endo wasn't really taking over my life.
The injections were pretty hard at first, but the effects straight after having them seemed to settle after a couple of months. However, just after startng them, I starteed to have these 'episodes'. They were sporadic but when they came, they were awful. Tremendous pain, vomiting, crying. I looked for links every time it was happening. Had I drunk alcohol? had I eaten too much? Had I been able to go to the loo? Not at first, but quite soon, I started to feel that it was related to my bowel. When the pain was bad, I think I would need to poo (sorry for TMI!) or be sick. I put up with it because it wasn't too regular and I knew that I would be seeing my gynae in January. Once I realised I hadn't poo'd for a week, so the doctor gave me Laxido to take when I needed. I was also taking ibuprofen, which sometimes helped, sometimes not.
So in January i went to see my gynae. I told him that the episodes were getting more and more frequent, the pain was getting worse. It was starting to interfere with work. Luckily i only work 3 days a week, but Im a teacher and was having to be taken out of class. When the pain comes over me, I can't concentrate or think of anything else. I was wearing heat patches every day because they were the only thing which seemed to help. He asked whether the pain seemed to coincide with any bleed, but it didn't, the bleeds were quite small as they rightly should be on Prostap, if any at all. He asked whether I bled from my back passage, I don't. So he was pretty sure that these episodes affecting my bowel were nothing to do with my endo. I needed to see a gastro speciliast. Ok, no problem.
The next day I ended up at A&E. They did some blood tests (which to be fair my doctor had done too - looking for colitis and such problems). Then the doctor poked at my stomach and when I flinched he told me that he'd hardly touched me. He said to go back to my doctor and ask for a referral to a gastro specialist. I left feeling like an idiot (but of course the pain had passed after a couple of hours as it ALWAYS does).
So I went back to the doctor, who refused to refer me to a gastro specialist without me having tried medication for IBS. So i took the medication. Tbh, it seemed to help m go to the toilet more regularly but the episodes of terrible pain contined. I went back to the doctor. She asked me what i would like her to do... I said id like a referral to a gastro specialist. She said ok. She wrote me a referral letter but said that it could take weeks. So, I asked at Reception for a copy of the referral letter and i paid £250 to see a private specialist. He was very helpful (despite the letter from the doctor emphasising the fact that she thought I had IBS but i was the one that was keen to see a specialist and that I have a history of anxiety and depression...!) and put me on a strict diet to try and help the situation. No problem, I'll try anything. But the pain didn;t go.
An appointment then came through for an upper abdominal scan. Not the pelvic one that looks at your ovaries and things (where you need a full bladder) but the one where you fast and they look at your gall bladder etc. They said the doctor had just asked for it to check that there were no other underlying problems. All clear. But then I started to cry. I told the sonographer how much pain I was in, how everyone kept telling me i had IBS but i didnt know how to cope with the pain etc etc etc. So, she did a pelvic scan for me... And there it was, the humungous endometrioma, squashing all my organs, so big you can't tell which ovary it's on. 14cm I think this one is. 14 cm?!? No wonder I'm in pain. No wonder I struggle to go to the loo. There's no room in there for anything else to function.
So, then it took me 5 days of phonecalls to my gynae's secretary and the appointments line to get in to see him and of course, now I need a laporotomy. He wrote urgent on the sheet but 2 weeks later I still dont have a date! The pain is now daily. i take regular co-codamol but even that has times when it doesn;t work. Like last night. Up in the night, crying, heated bean bag on my massive tummy....
And on top of all this, it's the moods. I've always been terribly up and down as a person. Moody, I think people say. Everything's an extreme for me. But lately, I can't even cope with my head. Im irritable, Im losing my temper with everyone. This morning I threw a mug and smashed it... not recommended at 5am by the way, the neighbours weren't impressesd.
I'm not sure how many people wouldve read this far, because i haven't actually been concise with my story, but i can't say how much better I feel just for writing it all down. Im always talking about it in snippets; 'ive got endometriosis' or 'Im waiting for surgery' but when you look at it like this as one whole story, and all of it in a year, it's not surprising it's taken over my life!
At least it's sunny outside today, that will help.
Lots of love to everyone, my thoughts go out to you all!
Lx
Hint Of Light At The End Of The Tunnel
Please help I'm at my wits end this pain is so bad 😔
Got my first lap Thursday 
Diagnosed with endo but gynae says its NOT causing my chronic pain. Help!
