Diagnosed with Endo 20 years ago, and Adenomyosis 2 years ago. Feel like a 90 yr old not 43. Any advise?

Hello there. This is my first time on any discussion group. I have struggled for years with Endo. Have had 5 laparoscopies, now have Adenomyosis which was described sensitively as- "You womb is like a current bum, I can't operate on that". After this, my body rejected the Mirena Coil which was fitted during last surgery.

I have asked for a year to see a new specialist as moved and now waiting on appointment with Endo surgeon. I was referred by GP but the Gynea I waited 6 months to see just said, - " Im not an Endo specialist - I can't help you, I will refer you again".

I am in pain most of the month with about 7 days rest from pain each month. I got a Stomach Ulcer this summer and was told I "can't take pain killers anymore". Which is like you have to stop breathing to someone with Endo/Adeno. As you can tell Im very down. Take citalopram for depression for 10 years but again GP says I have to stop that due to stomach ulcer so now on v low dose which has no effect on my moods.

Im desperate and very alone. Can anyone advise or give me any ideas to self help as Im finding it hard to see the point in anything at the moment. I have no children and Im 43. I had a good film industry career which i had to stop due to my endo pain. I now work in an office locally at a desk and I still get exhausted. Sorry to long moan. Never done this before and flood gates opened. Thank you all.

3 Replies

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  • Sorry it is so bad for you right now. Have asked for a referral to a BSGE centre, they are endo specialists. It might be a bit of a wait but at hopefully you'll be seen by the right person. Have they tried giving you omeprazole to protect your stomach. I have had an ulcer but take omeprazole whenever I take naproxen to help protect my stomach. I'm sure there is some pain killers you could take could you ask to be referred to a pain clinic? Have you tried tens machines? Hope you find some help soon.

  • Hey there. I wanted to get in touch as it sounds like you're in a similar position to me excluding the stomach ulcer. 41, had a great publishing career that I had to leave due to Endo and adenomyosis. I suffered multiple bereavements just before losing my job, Endo became a lot worse and am on sertraline due to the effects of the bereavements plus the effects of Endo.

    6 months ago, I started with a piercing pain in my stomach. I was terrified it was a stomach ulcer due to all the painkillers. My dr put me on omeprazole and fortunately I haven't had the feeling since but it's a worry. I can completely understand when you say being told you can't take painkillers when you're in agony is like being told you can't have air to breathe. It must be terrifying. As I say, I haven't been diagnosed with a stomach ulcer - hopefully the pain I had was the stomach lining being aggravated but if I was you I'd do as much research as possible regarding whether it's safe to take painkillers after omeprazole if you've already had a stomach ulcer and go back to your GP or see another one. If it's really impossible surely they can arrange it so you can self administer a morphine injection or another painkilling drug. I feel like you have to work so hard, do so much research and take it to THEM to get anywhere with this illness rather than the other way round. I know I'd be utterly terrified at the prospect of no pain relief so I really feel for you.

    I'm unable to work at all at the moment and only recently have I been diagnosed with adenomyosis on top of Endo which I've had for years. Between that and the bereavements and loss of career it feels like life has been on hold for 2 years. I get very down, it's difficult to arrange to see friends as I don't know what my pain level will be on the day, I'm desperate to get back to work but I know I'd be sacked within a month due to the state of my health, I've been single for 2 years as I hardly go out and the idea of not having kids has felt like the final nail in the coffin.

    I've recently had a very poor hospital appointment at a BSGE centre where I thought finally I'd receive some help (and hope!) so I'm now back to square one researching Endo specialists at BSGE centres so I can insist my GP sends me for a second opinion. It's a bloody slog and I'm finding it really difficult to take it all on. I'd suggest you also research BSGE Endo specialists. As I learnt the hard way - all are not equal. They will be far better informed than the GP regarding pain management. I'm sure it's not uncommon for them to see people who have developed a stomach ulcer seen as we all have to knock back so many drugs with Endo so hopefully they can come up with a plan for you.

    As for self help...hot water bottle, Dead Sea salt baths on the days it's possible to safely get into a bath, anti-inflammatory diet, evening primrose oil and lots of omega 3 foods...I'm sure you've heard it all before and excluding heat I can't say anything has been miraculous for me.

    Take care and do feel free to message me if you'd like to chat xx

  • Hello

    Sounds like we are not as alone as we thought. Thank you for taking the time to respond. I honestly didn't expect a reply. It felt a bit better to moan to the air though. My friends and family have all heard it before and are stuck for advice. I rarely go out now for same reasons as you. I don't like planning -as you never know how you are going to feel. Ive taken a boring desk job that makes me feel like Ive "given up" slightly. My new boss is a bully and likes to criticise everything i do so I take it personally which makes me feel even lower. Once upon a time I would not have put up with it but feel so low - I just take it on chin and cry my way home like a child. They don't realise that your CV says you have had this great career but actually you are "broken"now both physically and emotionally. If I could just hide from the world - that would suit me but we have to get up every day and get on with life don't we?

    I take lansoprazole that is stronger than omeprazole for the ulcer and I sneak a few naproxen when Im "dying" but I pay for it with sore stomach for days. Naproxen is the only cure for me, makes me feel sick but rather that than constant pain. Ive done a lot of research myself and going to take a pile of papers to my "specialist appointment" on Feb 8th so I don't just get fobbed off with the blurb you get off Google from the Doctor. Its insulting when you get the same info from each doctor. They seem to be doing some surgery in Norway and USA on Adenemyosis which sounds ground breaking so going to look into that. With my old job I could afford private health care but have to rely on NHS which is proving to be a long road to travel.

    Im going to look into BSGE now - thanks for your advice. I tried to message you but would not work. Maybe Im doing something wrong but feel free to have a moan or discuss anything. Sounds like we are both in same miserable boat. Maybe we can help each other find ways out?

    Take care and thanks again for your time and advice. Have a good sunday night and hot water bottles, blankets, hot fires and tea are our friends!!!

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