Hey, i'm new on here and want some support and advise :)

Hey so I'm 20, I was diagnosed with Endometriosis 2 years ago. They found it because I was having my appendix out. Later that year they did a laparoscopy to remove some of my endometriosis as it was quite severe and very painful. After a few months it grew back and they don't want to operate again just yet because the more they operate the more scars and difficulty it can cause. They are trying me with steroid injections at the end of the week.. has anybody had steroid injections? If so how are/did you find it?

I am struggling a lot with the pain and losing a lot of money missing days off work because times i physically cannot move.

I haven't actually spoken to anybody with endometriosis so it will be nice to have some support and advise.

:)

11 Replies

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  • Hi serencatrin

    Sorry to hear about your experience. Did you know we run support groups around the country?

    endometriosis-uk.org/suppor...

    Louise

    Endometriosis UK

  • Hello, thanks for the reply, I've heard about it yes but never actually looked into it, I'll have to have a look.

    Thank You

  • I'm sorry to hear you're having such a rough go of it.. I don't have experience w/ steroid shots for endo. and while I've gotten them for my other autoimmune issues I'm afraid that won't be much help. I can completely understand what you're going through though. I was also diagnosed bc of an emergency appendectomy just over a year ago. I had my first lap endo removal in Sept. and my 2nd a few months after that in Dec. I got the Mirena placed in Sept. as well but so far it just seems to make me feel like a menopausal woman pms'ing! Idk what your situation is but if I've learned anything dealing w/ chronic illness the past 11+ years is never be afraid to get a second opinion if you're able to. I'm 26 and I know for me personally it was worth the risk of some possible scar tissue to get the chance at less pain and having a life again. Hope you find some answers and feel better soon!

    Amanda

  • Aw thanks for that bless you, I've got the implant at the moment, I had the coil put in but it caused me so much pain I had to have it removed. The doctors have said if the steroid injection doesn't work then I'll have to have another laparoscopy which I don't mind, the scars are tiny. I'm glad to hear you're getting your life back on track.

  • Hey hun,

    I'm sorry you're having such a rough time! I'm in the same situation as you, diagnosed 2 years ago, excision surgery and mirena in may & ny symptoms never went, just got worse so now I'm on prostap injections. I'm sorry that I can't answer anything about the steroid injections :/. When the doctor says they don't want to keep operating on you, when they talk about scars, they don't mean abdominal scarring on the outside, They mean that scar tissue can build up inside you where they are removing your endometriosis which can cause more problems and depending on where you have it removed, it could also block your fallopian tubes. That's why they don't want to do another surgery on me because I tend to over scar inside for some reason. They are sending me for an mri scan, I have that on the 8th of Feb, and also just seeing how I get on with the prostap.

    I hope someone can give you some advice soon xxx

  • Aw bless you! I hope all goes well for you, yeah they did mention the scar tissue inside which is fair enough I understand that. I'll soon find about about the injection, hopefully it helps, it'll save another operation

    Thank you xx

  • Hi,I understand exactly how you feel. This started for me at about 15. Prior to that I was severely anorexic and stopped getting my period ( first time at 11 years old) for me I have not had any issues with having children (thank God) I have had 2 miscarriages though. I was diagnosed with it at 25 but didn't have the surgery until 31 years old. (Almost 2 years ago ) this controls my everyday life. I get my period 2xs a month as well. The pain is excruciating and I cannot move. But with children you have to force yourself to. I feel it everywhere it seems. I have many other issues with intimacy with my husband and I, bowel movements, going pee pee, back pain,leg pain,chest pain,heart burn ,dizziness (feeling like I can't see), fainting spells, headaches,depression ..there is probably more I'm not thinking of right now. It makes you feel like you are alone..and it breaks my heart because my children know when they see me this way what it is. I have not had injections..my Dr wanted to start me on lupron,but I will not do that. My sister n law did it and after they stopped it the symptoms came back worse then ever and she also gained close to 75 lbs. It seems all these drs want to do is inject us and shove pills down our throats. I'm very big in not taking drugs or any pain pills. So I pretty much suffer daily to the full extent. I feel it is a battle I will be fighting my whole life.

  • Aw wow bless you, I'm a bit reassured that you've been able to conceive but bless you seem like you have it tough, it's effected my bowels and bladder too it's really not nice. Are you planning on having anymore children? I know they can do early menopause but that would be such a hard they to go through especially at your age. You must be so strong to go through it all without painkillers! I wouldn't cope. It's nice to actually talk to people who have it aswell because you know what eachother are going through. I've had problems with intimacy and partners in the past, they've never understood how much we actually suffer, my ex left because I was going through a rough patch with it but it made me stronger. I hope you find a way to make it easier for yourself and I'm sorry to hear that you're going through so much. X

  • Thank you for your kind words. It is really tough mentally and physically. It really messes with your head. I do take ibuprofen but that is it and hit the couch with my heating pad. I've been blessed to have 4 babies,so no I'm not having anymore. I also had 4 c-sections and that took its toll after my 4th. My husband and I have been together for 16 years,since we were 17 years old! It was very tough on him in the beginning and me because you don't even know what is going on with your body! He has become so strong and supportive for me. Especially after I had the surgery and he fully understands that this is a real thing. When you meet that right person and they love you through it all ,you will know because they have to go through this with you in a way too!! You are strong as well and don't ever give up! I still now have many days where I'm like when will this end ..is this really how it is going to be forever? Do you ever get those people who say "Oh I know my period is so bad too" and you look at them like. I wish it were just my period!! I'm Jessie by the way..I'm very glad to meet another woman who is going through this (but sorry that you are!)

  • Wow so he's been with you for it all really. Thankyou for your response it's so reassuring to speak to someone who actually knows what it's like, a lot of the time people thing I'm over exhadurating, I wish they could feel what it's like just for a minute. I wish you the best of luck with everything. X

  • Yes he has! And I know what you mean. This is our "normal" ...and it is far from it!

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