Advice please!

[Catlover93]

Hi all,

At the moment I feel like I'm banging my head against the wall and not getting anywhere. Let me tell you about my story - I was diagnosed 5 months ago in july with endometriosis after having excruciating pain for over 3 years. Now I have finally won the battle of being diagnosed, I'm having to fight again to try and figure out what can manage my pain. My consultant fitted a mirena coil after he found the endo, and nothing have improved I still get pain on a daily basis, and I take pain relief that cancer patients do. I had pain-block injections about 2 months ago, which also didn't help. I take a large amount of medication daily, and I just don't know what to do the pain is still unbearable. I'm 22 years of age, and I feel like an 80 year old woman. I take antidepressants in the morning, morphine sulphate tablets, amitriptiline, oramorph, cocadomal, and anti-inflammatries. My life is ruled by my endo, and I feel like there is no light at the end of the tunnel. I have tried everything, I'm currently having counselling but obviously that's not doing much for my pain. If you name it, I've tried it. I just don't want to live the rest of my life surviving on painkillers to be able to take the edge off my horrific symptoms, but I don't know what to do.

Please can someone advise or recommend something I can do to make the pain ease. Also, who can I see to remove my coil? I don't see the point in it being there if it's not helping my symptoms.

Thank you & sorry for the long post lol

Lots of love

Xxxx

[Runner92]

Hey! I am 23 and know exactly how you feel! sorry your suffering so much

All the medication totally messes with your head. I have also tried everything i have had sooooo many different types of contraception to help and it just docent... marina coil was really uncomfortable. I felt like shit since the age of 14 and got diagnosed when i was 17. I had a laproscapy and felt a million times better talk to your doctor about it. It is the only thing that has ever helped me and every two years i get one done. Have you tried mefanamic acid?? i found it really take the edge of the pain. Transmic acid reduced heavy periods by changing the way the blood clots and reduces pain. You can take them with other pain relief as well so there is no harm in trying. I know this sounds crazy but I'm guessing you are currently at home ill from it but remember when you are alone and not distracted it also takes over your mind! making you feel worse

I know its hard but it will get better

lots of love xxxx

[Catlover93 in reply to Runner92]

Thank you for replying hun.

It's torture for us to be suffering so bad especially when we're so young. I just pray one day they will help make a cure for it!!! I have had 2 laparoscopices but they didn't help I had an amazing consultant (who also diagnosed me, and treated me) but unfortunately he's gone abroad to work for a year so I'm really gutted that I can't see him to ask him for advice. Yes love, I used to use mefenamic acid quite often before I got diagnosed, but I didn't feel as if they helped to be honest. Transamic acid I haven't heard of, so I will definitely ask my doctor for some thankyou!

I know hun, I've recently just gone back to work after being on sick leave for 7 months so that has helped take my mind off things, but I'm still very depressed over it. Me and my partner are hoping to try for a baby in the new year, ans I have heard it does help - I am not doing it just for the pain relief lol we have been discussing it for a while.

But in the meantime I would love to find something that can give me some sort of normality in my life and not make me feel like a zombie. But on the other hand, my tolerance is so high to painkillers nowadays not even morphine helps my pain. It's just a vicious circle

Thank you for your comment lovely, and I hope you find something that works for you very soon.

God bless

Xxx

[curlywurly44]

Hello, i'm so sorry to hear your suffering. It sounded just like me when i was your age, i'm now 36. I had surgery last November when a coil was fitted and it made my symptoms worse too. I asked my GP to remove it after 4 months and i have been so much better! Don't feel embarrassed about asking. Have you tried co-codamol as well as ibuprofen. Sounds a bit scary but it does take the edge away for me. Also a Consultant years ago suggested i started taking painkillers a day before if you know when your period is coming, sounds a bit strange but it does work for me. I also agree with transexamic and mefenamic acid.

I wish you lots of luck and good wishes, things will get easier for you

xxx

[Catlover93 in reply to curlywurly44]

Thank you curlywurly44,

I am definitely going to have my coil removed soon I just don't know where to go to have it done. Yes I have been taking cocadomal for 3 years so I'm very tolerant to them I take oramorph daily now and thats not starting to work very good. I will definitely ask about the transamic acid thank you. And thank you for you kind comments.

Lots of love

Xxxx

[sazg]

I'm 22 and I'm exactly the same! Since starting my periods at 11 nothing was right after alot of hassle and pills and tablets and being told it was in my head I got diagnosed at 14 through a laparoscopy. Since then I have had 2 mire operations- one caused more problems and perforated my bowel and in the other they found so much damage! I'm a very complicated case, I'm under so many different specialists! It's ruined and is still running my life- I had to give up uni and now I can't work, I can't do anything with my life! I'm on morphine based medication but even that doesn't help much anymore. I did have the coil at one point and that made me worse so got taken out,if it isn't working I would suggest getting it taken out. I have complex grade 4 endometriosis and it's destroying and runining my life! Everyone around me are living their lives and I can't as endo is controlling it so much- I feel like there's no light at the end of the tunnel either and that it's never going to end! I feel about 90 not 22! X