Feeling fed up: Dnt no where to turn to... - Endometriosis UK

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Feeling fed up

Cummins6 profile image
7 Replies

Dnt no where to turn to suffer with endo the pain is unbareable only had second lap done in April and have mirena coil fitted already tried all the diff pills consultants say there is nothing self that can be done as I am only 22 it's a case of get on with it so frustrating as it affect the quality of my life I am not able to be a normal 22 year old I have to work have pills to pay bit often end up being off sick when I dnt work I spent most of the time in bed as I feel awful I cannot make plans as I dnt no how I am going to feel and often when I make plans they have to be cancelled what makes matters worse I also suffer with PCOS which seems I have had a flare up I have acne now all over my chest back and neck and facial hair thick and black over my right cheek I feel like a freak inside and out I dnt want to go outside I'm embarrassed and feel so ugly I have no self esteem left this flare up has only happened over the last 3 weeks it makes me worry about how much worse it will get I cnt find anyone who will listen and understand doctors have no time I no told wear more make up and shave how is this useful feel really low anyone have any advise I just need to tlk to people who mind understand x

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Annabel22 profile image
Annabel22

Do you have a good gp? If not you should try out every gp in your area until you find one who really listens to you and wants to find solutions. What pain relief do you take? I take pregabalin, nortriptyline and sertriline, this combination works well. I dont have p cos so I cant advice on that, but im sure if you had a gp who was motivated to try everything things would be much better for you. Good luck x

Jelly67 profile image
Jelly67

Hi there

I'm sorry you're suffering so much. I've had pcos and endo since I was a teenager and understand how awful you feel. Most GPs lack the knowledge needed to help us get the right treatment. I'll send you a PM with my advice and the treatment I've had that has helped me over the years. I hope it helps. Take care. Xxx

I had a mirena coil fitting at the same time as a laparoscopy a month ago. The pain caused by the mirena once my period started was actually worse than the pain I had on waking up after the surgery.

It was truly unbearable; I knew my body was rejecting the coil. Consultant told me to persevere, that my womb was in 'mini labour' with full blown contractions. She really didn't understand how much pain I was in at first. No amount of codeine, tramadol, and come the end, oxycodone (stronger than morphine) could stop the pain. I had to go back and see the consultant 3 times in 8 days because I was in such agony. In the end she agreed that it wasn't working for me, and was causing the pain I was experiencing, so she took it out.

That was 3 days ago. I'm still bleeding (now 17 days), but that excruciating pain of the contractions has gone.

I know everyone is different, but I was like something possessed with the mirena.

I wonder if removing it might help your pain levels go down, too?

Are you being seen at a specialist endometriosis centre?

Cummins6 profile image
Cummins6 in reply to

I was under a gynae when I was younger and recently been back to c them after gp refered me they saw me once basically said you have had two laps in two years we clean u out so to speak u have tried every pill since u was 13 nothing works coil is last choice so had coil for two month and it has made it ten times worse I under what to do they r not interested gp are not interested they get fed up of seeing me, work are getting annoyed with time off due to pain and hospital admission and dnt have family who understand

You need to DEMAND that your GP refers you to a specialist endometriosis centre. It's your right to be referred where YOU choose

Cummins6 profile image
Cummins6 in reply to

I'm just scarred everytime I try to push something I'm made to feel like I'm crazy last time I demanded to c referred back to gynae team because I knew things were not under control they referred me to a psychiatrist telling me I needed to c one as I was over reacting it makes me feel I just have to put up with it but I'm scared if I dnt act one I will b in contact agony which I cannot take much more off and two I'm scared I will leave it too long and not be able to have children which is a must for me it's the one thing I want in life as does my partner

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