I'm a newbie here

[emcoll]

Hi everyone, I'm new here. I found this forum whilst frantically searching for someone to talk to, someone who will listen instead of shutting off whenever I talk about my diagnosis.

I'm 17 and got diagnosed with endometriosis in April of this year. I won't lie, it's been tough, as I'm sure everybody feels. I feel quite lucky in the respect that it only took 6 years to diagnose me, whereas it takes other people 10+ years.

I first started having problems when I first got my period at 11. I always knew something was wrong, but was always told that I had "more painful and heavy periods than most girls". Great. So, I just shut up and got on with it through fear of just being told it's normal. I knew it wasn't normal but nobody seemed to listen so I just suffered in silence. And that's what I did until April 2016. This is when I got a new gynaecologist. She took one look at me and demanded answers as to why this poor 16 year old girl had never been taken seriously. I asked myself the same question.

She trialled me on different medications, which were all unsuccessful, so instead of mucking about and making me wait whilst she 'decided what would be best', I sat there in the consultation room, signing a consent form to have my first laparoscopy. The waiting list was extremely long, but I said I didn't mind because I'd been waiting since 2011, I'm sure I can wait a little longer.

I had my laparoscopy in April this year. It wasn't the best of experiences, I won't lie. The next few months were spent crying into my partners shoulder as he told me everything would be okay. I didn't believe him, but I tried my best. I'd already been told that I'd have fertility issues when I'm older due to family history and issues, and hearing that I'd got endo which could further increase my problems was a real kick in the teeth to the both of us.

Since my laparoscopy, things have been - not that great. The first 4 weeks were brilliant. I could wake up and not cry. I had really low pain levels. But then things started getting bad again. I went to the doctors, and she suggested the mirena coil, which I was really hesitant about because the thought of it made me cry and have a panic attack. She suggested the DepoProvera injection. I gave it a shot, and tried to carry on as normal as possible. It didn't really work. I gave it another shot. Still not working.

And that brings us to today. Currently sat at home crying my eyes out because the pain is so bad and I've been given nothing for it. I've got to wait for a referral to see a consultant back at the hospital, but goodness knows how long that will be.

Sorry this was super long! It's not the full story in all it's glory but there we go. Just thought I ought to share my story as well as read other peoples! If anyone has any questions, hints or tips feel free!

Thanks,

Em!

[3caramel7]

Lets get things straight.You are allowed to cry, feel miserable, feel pain and yes nobody is listening! Endo is a chronic painful condition. It is a fairly unknown condition whose cause is unknown. If you are in pain then you ring the GP first thing in the morning and get an appointment for that day! I don't know you or your medical history, so I am not going to recommend you anything. If you are in pain now and its your normal pain, jump into a nice warm bath and put some epsom salts in it and float. Just float. If you don't want to get into the bath, get out those hot water bottles and go to bed! Light some candles, put on classic FM and have a nice glass of wine to relax. If it is new pain and you are really worried go to A +E!

[emcoll in reply to 3caramel7]

I've been napping on the sofa - oops! I'm so tired and with not being able to sleep at night because of the pain, I'm exhausted. I lost my job because of this, and now I'm completely lost on what to do Definitely need to find a hot water bottle and chill out - hopefully it'll send me to sleep!

Thanks for the tips!

[3caramel7 in reply to emcoll]

We have all felt rubbish at times and that's ok too. I often do and the Endo is not even to blame! First thing in the morning, lets get some pain relief and a referral asap. You know you can come back here anytime and ask questions or have a moan. We don't mind. When you have your initial diagnosis of Endo, you are relieved because you have proved to everyone, including yourself that you are not going mad and there was something wrong. Unfortunately the side effects of Endo isn't just painful sex or infertility. It can be job loss, break up of marriages and relationships, ruined careers,not having a family etc etc. I remember one relationship psychologist saying to an Endo pt that because she had been told that sex was going to be painful and that she was infertile, that she had unconsciously ruined or ended potential long term relationships or marriage so that she didn't have to explain about the painful sex or why they couldn't have a family.

What we do need is lots of money to do research to find the cause and treatment of Endo. #AI and #machine learning can't come fast enough!

[VW17]

Really hope you see a good doctor and get some relief from the pain. I've had times like you describe and it feels never ending. Have yet to find out if I even have endometriosis and am 34. Started my period aged ten. I have tried all contraceptives and my body functions better without them. Had some bad side effects over the years. I have IBS and it's possible you have to. Have they discussed that as a possibility?

[emcoll in reply to VW17]

I've been diagnosed with IBS and have frequent attacks of that. The medication they put me on doesn't agree with the other medication I'm on and they refuse to give me anything else whilst they're trying to figure out what to do. More waiting

Seems to be I'm stuck on a never ending waiting list I hope you get sorted too!

[Emalouisa in reply to emcoll]

I've had every contraception I had my second op in august like you I also started my period at 11 and they were horrific lm now 25 now have the coil which has been brilliant so far I get the odd pain which is bearable also IBS which I done some research on and came across the endo diet so now I've completely changed my diet which has really helped I hope this helps you to

[emcoll in reply to Emalouisa]

Did they do the second op the same as the first one? They told me that this is a possibility for me but there may be issues with scar tissue, or other issues, she didn't really go into it that much. I have a fear of the coil due to a previous doctors visit which didn't go to plan and ended up with me getting very hurt. The IBS comes and goes but doesn't affect me as much as the endo. I'll have a look into the diet. Thanks!

[VW17 in reply to emcoll]

Have you tried buscopan? Can be bought or prescribed. Only thing that helped me...

[emcoll in reply to VW17]

I tried buscopan before but it didn't really work. It's possible it didn't agree with me first time round because of the other medication I was on at the time. May be worth another shot. Thanks

[VW17 in reply to emcoll]

Hope it helps 😁

[amelialloyd]

Hello! I am sorry that you've been suffering.

I can also relate as I was told that it was 'just period pain' and to 'grow up and get on with it'. It is unfortunate that the condition can be so misunderstood.

It is completely normal to be tearful. It is a chronic debilitating, isolating and extremely excruciating condition. You need to give yourself some credit because you are stronger than you think. It's not been long since you had an operation and found out the cause of your symptoms! It is a lot to digest and the body will still be healing from the operation too.

I suggest finding a GP who understands (I know, sometimes easier said than done) who is willing to listen and make a pain management plan.

It may take a little trial and error to weigh up the side effects of the pain relief against the reduction in pain but it will be worth it to make the pain bearable.

Personally I try to stick to paracetamol and ibruprufen, but I've found that codine phosphate helps in the nights of my worst pain but I only take it when I have to as it can be addictive. Dicloflenac is good to relieve inflammation.

If you ever need to talk I am always here.

Amelia

[emcoll in reply to amelialloyd]

I'm sorry you're suffering too!

It's so annoying when people put it down to just 'really bad period pain' right? This is all I've heard for the past years. It's still not completely set in that I have this excruciating, debilitating illness. Some days I just wake up and burst into tears, feeling so isolated even though I'm surrounded by those I love.

I've tried loads of medications and treatments, none of which have seemed to work. My GP is in the process of writing back to the consultant who did my operation, to see if she can do anything more, surgically speaking. For the time being I'm just stuck on really strong painkillers which cause me to not sleep at night but be so lethargic and drowsy in the daytime. I can't get anything done and feel so bad to constantly be asking for help.

Tonight is a bad night. My body is so tired, but I can't seem to get comfy to sleep. My mind is going crazy and won't calm down. Currently lying here, trying to tire myself out enough to sleep. The hot water bottle on my tummy hurts me but without it I'm in even more pain. Why is it so hard? Fingers crossed that I'll be able to sleep at least a little bit.

Thank you, that is very kind of you. I'm here if you wish to talk.

Thanks,

Em

[amelialloyd]

Hi Em!

It is infuriating. It actually convinced me that the pain was all in my head.

I'm the same! It is great to be surrounded by people that love and care about you, but sometimes it's hard not to feel like they don't truly understand how hard it is.

Ive also suffered with the vicious cycle of not sleeping at night and having awful days. Wierd as it sounds, try to enjoy being awake the extra hours in the night if you can. Use the time to try to read a book you've always wanted, or watch a series, effectively turn it positive. I found that accepting that I might not sleep actually helped me relax. You will eventually sleep when the body needs to. The less you think 'I can't sleep' the more relaxed you'll be. I do feel for you because it can be disgustingly terrible.

The stress of the whole thing can't be helping too so give yourself some time to digest it all.

Amelia 🙂

[emcoll in reply to amelialloyd]

Hi!

I was made to believe that it was all in my head too! I was sent to several therapists to 'free the pain' and'let it go'. I got so fed up of people saying it was all in my head.

It's such an isolating illness, to be surrounded by ones you love, but still feel so alone. You almost feel like you're trapped in a little bubble, separated from everyone else.

One good thing the illness has shown me, is who genuinely cares. People like my partner and my family. When I'm calling out to them at 3am, I'm not met with anger, I'm met with someone who is worried and willing to help. And whilst they may never fully understand the true extent of what I and many other women suffer, I always know that they will help in any way they can.

The sleepless nights have only been occurring the past 4 months. About a week post-op. I put it down to all the medication I was on, but it didn't affect me too much. It's been gradually getting worse, with it happening more frequently, and find it more and more difficult to tire myself out, I just lie in bed and try to relax. I try to individually relax each part of my body, one by one, starting from my feet going up. I know some people think that is total bull, but I find it helps me to just chill out. Sometimes if that doesn't work, I'll listen to some of my old favourite songs, or watch random videos, anything to make nights feel less lonely if I'm on my own. If my partner's with me, he'll play with my hair and just talk to me, just to let me know I'm not alone.

Thanks for your help!

Em