Just been diagnosed with endo: Hey guys, I... - Endometriosis UK

Endometriosis UK

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Just been diagnosed with endo

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Hey guys, I thought I'd share my story.

I'm 21 and was diagnosed with endometriosis when I had an emergency appendectomy 2 weeks ago, I saw a gynae in december 2012 and they suspected I might have endo but referred me for a hysteroscopy that I didn't end up having as I slipped through the net. It was found on my pelvic wall, pouch of douglas, left ovary and multiple spots within my pelvis (didn't specify) my symptoms affect my work and daily life, I won't go into too much detail but irregular heavy bleeding, constant dull pain to severe pain where I cannot get out of bed, depleted iron stores, constant tiredness and hip pain. They put me on Loestrin 30 to tricycle but haven't had any relief, drs have prescribed cocodamol 30/500 but they just help what I describe as background pain. They refused to give me anything stronger at the time as 'its just period pains - its normal and not that painful' well, if they felt the pain, they would be screaming for more meds! Arghh! I just feel so frustrated and down, none of my friends understand I've lost friends due to not socialising as much as I'd like. I am now waiting to see the gynae again but that could take months. Even though I look fine on the outside, I feel like there's a war going on inside my body. Sorry for the long story, but how did you take your diagnosis? What treatments did youu receive? And any advice on pain relief, I'm so fed up having a hot water bottle 70% of the time!

Thanks for listening girls, keep going strong, one day we will beat this!

6 Replies

Hi I had been surviving on paracetamol, ibuprofen, and codeine but as you say only take a little pain away and was struggling with the constant pains plus dealing with the emotional side of what they found. I still have 3 weeks before my gyni appointment so went back to doctors as was struggling to cope. I now have notrytaline which is for chronic pain and non drowsey as need to work. It is also used as anti depressants but mainly in higher dose. I've now been taking them for a week and am feeling much better. The pain is less today although still there and still on painkillers too. But I've felt like I've been hiding away and not wanting to do anything but yesterday visited a friend and today popped to town for a browse round shops and that's first time I've felt like doing anything since op so I'm hopeful these new pills are working!

There are other types of pain relief so go back to your doctors and explain you need something else before you see gyni. Many others on here are on amitriptyline which is the same but can make you drowsey which is why I have nortriptyline instead. I hope that helps as I have same symptoms and use hotwater bottle or heat bags too as that's the best relief at times.

Sorry to hear you're in so much pain. Do you have pain doctors there (as we do in the U.S.)? Here, these are doctors whose primarily job it is to see patients in chronic pain. They are usually able to offer significantly more solutions to people's pain and are less likely to ignore it or suggest it's in your mind, etc. (so frustrating!). One of the things that did help me, a bit, was an injection that works on the nerves. I know you cannot go here but maybe taking a look at the link will give you an idea of the widespread options for pain relief: anesthesia.ucsd.edu/divisio...

I've also taken Cymbalta; there's no generic so it's more expensive here but it definitely helped a little bit, mostly with the back pain I have (not as much the pelvic pain). It is a bit difficult to come off of; other things I have taken over the course of the last few years include vicadin, percocet, oxyodone, and oxycontin. My suggestion is to avoid the medications that are control release medications, meaning you have to take them every 12 hours, etc. around the clock. It's better, even if you--like me--have pain everyday, to take something you can control, hence the oxycodone is better than the oxycontin. I have had no major issue transitioning between medications or struggling with addiction and find that the concerns people have are overblown; if you can find something that helps, more power to you in my opinion. :) Of course, there are side effects like being tired and you'll certainly feel sick a few days if you've been on something for a while, but it's far less pain than we tend to experience anyway and we are great experts at it. :( I really wish you the best in finding a good doctor and good medications; when one doesn't work, another might and most often you'll need a combination of things that you'll figure out over time. As a final note, in my experience, nothing wipes out all the pain unless you take enough to go to sleep and that's not a route to go; the goal for most doctors is to give us enough relief to make our lives liveable. For me, that's usually a 50-60% reduction. Some people find more relief if they take something like Lurpon after a surgery to remove the disease--keeping the endometriosis at bay for a while.

Good luck!

I have just looked back through my bulging files of historic medical info and found a very short letter dated April 2002, when it 'endo' was first diagnosed. It read............at laparoscopy you had a swollen left tube with some adhesions between the tube and the left ovary. The right ovary was normal. We removed the left ovary only and at the end of the procedure everything else was clear within the pelvis. The histology has confirmed endometriosis in the wall of the tube)!!!!!!!!!!!!

After this letter I had absolutely no idea what endo was! No one explained it to me at all, and

little did I realise the ongoing consequences of those few little words! I ended up losing both tubes which where later found to be damaged and kinked by endo/adhesions. I then continued to have fluctuating and often crippling pain and accompanying symptoms which led to all sorts of investigations through Gp visits and various medications, and went on to have further laps and a hysteroscopy in 2007 where guess what!

I was found to be riddled with endo and adhesions which had moved into my stomach (tube stump stuck to bowel, ovary to bowel the adjacent side and round belly button)! The relief after this painful op was enormous, but sadly the pain crept back. So after more visits to the consultant after trying Mirena, they tried me on Zoladex injections and hrt, that didn't work which indicated apparently that adhesions where likely to be my biggest problem related to the endo. At one point it was suggested my problems may not be gyne but muscular skeletal! despite history. Then a possible radical hysterectomy was suggested if things not improving as I approached menopause.

I am still in pain daily using all sorts of medications Co Drydamol, Ibuprofen, Colpermin, Fybogel, Merbervine, Sleeping pills at night, Lactalose and even the odd Senna ( I get persistent constipation with alternating bouts of sudden diarreoh) probably made worse by recent CT scan detecting also Diverculitis Disease and small Hiatus Hernia and frequent piles internal and external.

Terrible pelvic pinching (right sided) and hip pain going down my right leg, low back pain, stiffness and body aches, frequent urination and extreme fatigue. I too have become a virtual recluse after once being a really sociable person. For years I was told my symptoms where probably just IBS!

Finally, I have been told that further possible major surgery may cause worsening adhesions! How I wish someone had explained to me the possible implications of that scant little mention of 'histology has confirmed endometriosis within the wall of the tube' and the years of pain and life wrecking symptoms that were to follow .....!

PS Just re read my comments and realised I had typed 'we removed left ovary only' which was supposed to be typed as 'we removed left TUBE only' my mistake.

Hi, i was 21 when i was diagnosed, now 34. I too

lost friends due to the fact that i became tired of explaining what endometriosis was and ho bad it can be! Even now i only tell people when i really have to as i feel no-one understands and they think its just period pains!

My only saving grace now is my cousin has it, so now i have at least one person to speak to, but feel my best friend is actually my hot water bottle!

I take co-codamol 30/500 i have tried ammitriptyline bit it makes me so drowsy. I see my consultant again next week to organise my 4th laparoscopy.

The advice i would give you is stick to your guns regarding any treatment you want or dont want, its your body and you are always the best judge of what your experiencing. Your true friends wil always understand and be supportive. If you need a release and need to talk to people who are going through the same thing then we are all here to listen.

Take care , big hugs

Thank you all for your kind words and understanding.

I'm sorry to hear you've had a rough ride too, I don't feel so alone and misunderstood now.

I received my appointment for my gyn appt for 6th June, should I bring someone with me? I've always gone to appointments alone

Take care girls

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