Adenomyosis

[yllek1982]

Hi everyone!

I just wanted to talk to someone who is going through the same thing as me really as I feel a bit lost. I have been back and forward to the doctors since I was 20 and am now 33 and have finally been listened to and had some surgery to see what was going on. Anyway, I have Adenomyosis and Endemetriosis (although they have blasted away the Endemetriosis). My tubes have been blocked which I have been told will mean that I will probably not be able to conceive without IVF. I am in constant pain and feel awful the majority of the time. To actually try to conceive hurts so much and I feel that I have no one to talk to about it. I was told that getting pregnant would help with it all but they won't help with IVF until we have been trying for 3 years (which should be this October). It just feels like I have been fobbed off for years and now they've found the problem (which seems to get worse by the day) I now have to just deal with it. i just wonder if anyone else has experienced the same thing as I don't have anyone who can relate to this at all- it's such an awkward thing to talk to people about anyway.

Thanks so much for reading,

Kelly

[victoria044]

Hi Kelly, firstly you are not alone. I have both rectroviginal endo and adenmyosis awaiting mri and then major surgery as the endo is everywhere. I'm in constant excruciating pain especially back and flank pain.sex and internal exams are horrific can't describe the pain it's like a knife being twisted inside me. I know exactly how you feel,friends and family just don't understand and you don't want to keep talking about it, it's really awful and gets you down. I think the waiting for treatment is the worst part, and has a sufficient effect on your quality of life. I was fobbed off for over 10 years, being told I had IBS what a joke! Thankfully my new gp is great and that really does help.Xx

[yllek1982 in reply to victoria044]

Thank you so much for your reply. I was told it was all in my head and that I should go to sexual health counseling as I obviously had a problem with sex! Internal exams are awful aren't they- I just screamed and cried- just horrible! I changed GPs and since then she's been so brilliant and resulted in me having the operation to find out what was wrong- I have an appointment tomorrow with her as I just don't know what the next step is. The hospital have told me what's wrong but there has been nothing suggested (apart from pregnancy) to help. Today I have been particularly bad, feeling very sick and it's making me not want to do anything but whenever I say I don't feel well to my husband it's like I'm a broken record as he says oh not again or oh right. I am so sorry that your going through this by the way as its horrible but I must say its so lovely to talk to someone who understands xxx

[jvg69 in reply to yllek1982]

Oh no so sorry you were fobbed off, how awful to be treated like that. Makes me so cross. x

[yllek1982 in reply to jvg69]

Thank you- when I was first told it at 20 you do kind of start to believe it- they are the doctor after all! So glad I perservered though to get it sorted- I knew my body was telling me something was very wrong. Xx

[victoria044 in reply to yllek1982]

Hi, I am appalled that they inferred you have an issue with sex. I wonder how they would react if they were the ones going through this horrific pain!!! I can't even use tampons anymore. I'm pleased you have an understanding gp now, it took me over 10 years to be diagnosed and start treatment. They also told me to have a baby,easier said than done with this disease! What they didn't mention was the higher rate of miscarriage due to endo and adenmyosis,I lost my baby at 11 weeks and it was heartbreaking! Had to have surgery as it was an incomplete miscarriage where they found the endo and adenmyosis is obliterated my pelvic area. This disease is soul destroying and horrendous for anyone effected by it. Hugs xx

[yllek1982 in reply to victoria044]

Oh my goodness that's awful! I am so sorry. It just seems crazy that so many are being misdiagnosed. Are you getting the help and support now from the doctors and specialists? Xxx

[Hidden in reply to yllek1982]

I don't think pregnancy should be suggested as a 'treatment' , what if yiu didn't want kids?! (I know you do).

And relief from pregnancy is usually only temporary.

Sorry you're in this boat, have they suggested any other therapies (the pill, gnrh/ prostap injection, surgery)?

If not it might be best to get a second opinion from another doc.

[Hidden]

Kelly, I'm 33 too and am in exactly the same boat. I've been offered ivf but am.to poorly just now, my body just can't handle it.

Its very hard, VERY hard. Huge hugs <3

[yllek1982]

They blasted away the endo with surgery but they said the only they could get rid of aden was to have a hysterectomy as they said there was no cure for it. I was on the pill for years and I started to get break through bleeding which is when I started going to the docs as I knew something was not right- anyway about 3 years ago I was told to come off the pill and since then the flood gates (pardon the expression) have opened. I've been put on various tablets but nothing seems to work- the last lot of pills made me go a bit crazy tbh so I stopped taking them. I went to my gp this morning she is fantastic and has been so helpful she however told me today she is leaving in May- I really hope the lady that is taking over is as good as her. I've had to sort paperwork this morning to prove when I came off the pill- I am really hoping I get the NHS help. Im so sorry that your too poorly to do the treatment as of yet- I just haven't been able to shake the sickness off this week it's rotten. I'm so pleased I found this forum everyone is so understanding- thank you! Xxx