What's wrong with me?!

[Jaskirat]

Hi everyone hope you're having a good day,

I have been having pelvic problems for so long....approximately 10 years of slowly progressively getting worse pelvic pain. I broke down 6 years ago and forced my go to give me an ultrasound after years of "oh it's normal here have some painkillers". They found a big cyst on my ovary which burst the day before my surgery was booked resulting in me having now only a left ovary. From that point I thought naively I'd get better and that the pain would be behind me. If only!! It got worse much worse. Now it hurt 24/7 on period when I'm off period it still felt as though I was on! I couldn't run, excercise, dancing would kill me with sharp pains to my pelvis as punishment for doing anything! So two years ago I went though such a long process and found a specialist in endometriosis. They found some endo and cut it out but the pain is still here and now I can't even move around without painful repercussions. I have painful period pains all round not just when I'm on! such pelvic pain I cannot move and it goes to my upper thighs, the pain makes me sick and lack of appetite as a result.

I went to see a bowel specialist this week dur to the lack of appetite and nausea though I know it's from the constant pain, and all he could say was that my endometriosis that was cut out was not that bad not so much, so the pain is made up in my head ......it is honestly the hardest thing to hear when I know it's not true and after years of pain hearing that makes me so sad and lost. Plus only I can know how much pain I'm in so after crying and doubting everything, I am going back to see the doctor next week for results of tests on my stomach which I know will show nothing is wrong with stomach! Honestly bothing like a male doc telling you that you're not in pain when your on the sofa/bed all the time due to pain! It took me so long to come to terms with my pain that I refuse to let a bowel doctor make me upset!

I'm hoping that there are other women who have the same problems met the same resistance and can help me feel less alone. I've not yet found anything that helps except for lying still. But I'm holding out hope whilst lying here trying to distract myself from the pain with my hot water bottle for company. I'm sorry for the long rant but I needed to let it out. Hope I haven't scared you!!

Lots of hugs

Jas

[costagran]

Your not alone.

There are many of us.

maybe we have different causes of our pain.

But when you are told you have IBS and offered psychiatric councilling, you are defeated.

It seems thats the end of your mission to get better.

I dont know where to go from here on.

maybe one day I will keel over and get admitted to hospital and a surgeon that 'cares' will find the problem.

Until then painkillers will have to do.

We are forced to make our own diagnosis and act accordingly.

This week is my 5th year anniversary of my pain.

I have prescribed myself digestive enzimes recently but to be honest whiskey and hot water is just as good.

Do read the article in 'mailonline' about pelvic pain.

In the meantime let us all know if you have more tests and your results.

Chin up. x

[Jaskirat in reply to costagran]

Thank you costagran for your response! That's just so irritating that no one takes us seriously. You are so brace lasting so long with not only the problem but standing strong despite what doctors tell you. I'm usually very strong if I know something about myself nothing can move me because who knows more about myself than I?! But since this rubbish it's bought out doubts however I've realised there is a need to stay strong in all this crap because no one else will for me! Tgankyou for making me feel less alone.

I'll read that article definitely.

Here's to our concoctions of pain meds.

I'll keep you updated and let you know what the doc says next aswell as I see him Monday.

Thanks again and you stay strong!

Xx hugs

[Hidden]

Are you on a hormonal contraceptive? I'm asking because if you aren't your getting periods and the endo has a chance of growing back every period. If they even missed the smallest amount of endo it can go everywhere.

[Pamdella]

Hi there I am a 72 year old man mind started it 2002 I am it my 15th year of pain . Like so many people . Doctors don't know anything about it . I was told I was mad and sent me to a shrink .

Oh m god if I am mad then he totally lost it. I finally got the book called Pelvic headache . Or type it in . Anyway I got the book and read it then took it to the doctor's and said read this and who's bloody mad you or me !! Mine is brought on by stress . I hope you have some good days as that's all we can hope for .

Regards Derek

[Tayloj]

What treatment are you on post surgery? The coil can cause cysts and some pills also. Could it be repeated cysts? Scar tissue unfortunately can arise post laparoscopy which can be painful. I have had 3 laparoscopies and a coil fitted to try to reduce the lining of my womb and by default less painful periods but it hasn't worked so far and been in 5 months. I was really hoping this would do the trick and rid me of periods for good!

[Losing_sleep_xoxo]

I feel as if I could of written that myself it is very similar to what I have been through so you truly are not alone, I am now bed bound due to severe chronic daily pain from my endometriosis and all the scar tissue I have after having 13 operations over the years to keep removing endo then it grows back or multiple cysts bursting on my ovaries, i have been suffering now for 30 years. The endo has now spread to my kidney area and even my lungs. So many of us feel like we are simply existing not living a full life, I mourn the person I used to be and don't remember what it was like to not be in pain

My love and prayers to you my friend and all others in this awful situation 🙏 xx