At a loss... any advice great

Hi everyone.

Please help if u can. Wont go through my whole story but just recap over last few months. Went in for another lap and told me scarring from old endo tgere but nothing new. Told him ive had enough after 17 yrs of this i want it taking out i want my life back. To which i was told id t stop crying ive had a life f past 18 months whilst on prostap and they wont help cos theres nothing there. By this point i lost my temper and told him it only worked f 6 months cos once they put me on hrt all pain bleeding and problems came back and i want a second opinion. I was so mad. Now i stopped prostap and hrt in july and apart from the long period ihad as i stopped thwm not bled since but all the pain is there and getting worse than ever especially on the left side. My dr says ive t keep fighting them as they r the gynaes and if they cant find endo they need t work out what it actually is not just say they cant help go away. I just want my life back with no pain i want t be able t play with my 6 yr old without it hurting toouch or just being so tired i cant. So now i have two apps for two different gynaes next month now has anyone any advice or questions i can throw at them plz cos if someone doesnt help me soon i am going t cut it out myself then they will have t do something. Extreme i know sorry but thats how i feel now afyer 17 yrs of this.

10 Replies

  • Sorry for all the pain you are going through. I was diagnosed with endo last year and like you, am due my miracle baby boy - tomorrow! I conceived naturally at the age of 28 when periods returned after Prostap injections for 3 months.

    So you have not had a period since last July? And still getting a lot of pain which is getting worse? I know how frustrating this must be, my GP would not refer me to the hospital just saying it was period pain and kept prescribing painkillers but knew deep down that I have endometriosis. Had a crap social life because of it and just wanted my life be normal and seemed that I couldn't get the help I needed. When was eventually referred to Ultrasound Scan (had scan on my period) the sonographer said she could see a 3-4cm cyst bleeding in my ovary looks like cyst caused by endometriosis but on follow up GP appointment he said no it not endo cyst - keep an eye on it another scan in 3 months it will have likely gone away on it's own and guess what it was 1cm bigger and developed another cyst on the cyst I had! Only after 4 x A&E visits the following year due to cyst rupturing and it increasing in size did the hospital decide to offer an MRI scan and do laparoscopy last May.

    You should perhaps talk to your new gynae about getting MRI scans to see what is going on inside and also get your hormone levels tested. This might help establish why you not getting periods, but still a lot pain. PCOS can cause a lot of pain, in lap's the docs can see what is on outside of ovaries and uterus but not what is on the inside.

    Could maybe have endo developing deep inside ovaries which cannot detected in lap's or ultrasound scans (my very 1st UltraSound scan 4 years ago showed my ovary as healthy and normal but was getting so much pain in the ovary, endo cells were developing inside it before the cyst developed).

    Maybe it is not endo like they say but they need to see on MRI scan to rule out endo developing in ovaries. something else may have come about too like wrong levels of hormones, could be caused my long course of Prostap and hrt treatment. They need to find what is the cause of pain. When in pain there is something not right in the body they need to help find cause of your pain even if it is just scarring pulling on other organs from the old endo making the pain, but they need to test to see if anything else causing pain. Like find out why you not getting periods too.

    I would strongly ask for MRI they can see on those scans what Docs cannot see in laparoscopy - I know sounds bit backwards but I was sent for another MRI after my lap to investigate the size of my uterus and to look for left tube and see what size my cyst had shrunk to after it was drained. On MRI was confirmed they could not find left tube as could not find one in my lap. MRI also confirmed that was born with no left fallopian tube and could see and measure my right-sided unicornate shape uterus. They can see more sometimes on a big picture than what is seen scrambled on bits of lap camera. They also could look on MRI scan to see if I have a fully formed and functioning left kidney, because 60% of women born with a unicornate uterus also are born without a kidney or a kidney that does not function well.

    And ask for bloods to be taken to test your hormone levels see if they are normal or not. Ask what other treatment options are available other than just painkillers and Prostap and HRT. Let them know that you are frustrated and it is extremely important for you to establish the cause of your pain, you have had enough of being dismissed that 'it is not endo causing your pain.' If it is not endo then you need to find out what is causing the pain - pain that is getting worse and no periods is not normal. You are only 29 years old and want your life back and want to be healthy for your little girl, any anyone should understand that and the gynae is the one you have come to for their professional expertise in reproductive health so it is their duty to help you and find cause of your pain. They should, if any good at their job, listen and be empathetic and find out the right course of investigation and treatment is best for you. Hope that they listen to you and you get answers soon. xx

  • Thank u i will definately ask... would they be able t c if there is anything wrong with my c section scar with an mri too. I had an emergency c section with my daughter and started with a smal fold of skin it is now a large very full looking very sore and sensitive fold of skin i am a size 14 but have to get a size 18 trousers t go over it cos any preasure on it and im crippled f days x

  • They might be able to see if scar tissue developed and pulling on organs inside. My brother-in-law had his appendix removed when he was a teenager and when he was early 20's was jogging one day and afterwards had really bad pain he went to A&E. They said it was scar tissue/adhesions pulling underneath. So could be scar tissue causing pain...

  • Hey im really sorry ur having a tough time! I was on zoladex and all pains came bk as soon as i started taking HRT, so they didnt find any endo at all?? Can i ask wat they do to the endo in ur previous surgery's? Did the laser it? U can message me if u like n i'll do my best to help u out here! (((Hugs))) xx

  • Yeah ive had it lasered three times before x

  • If you have only had one period in over a year then I'm not surprised they didn't find much. Prostrap etc can shrink the deposits and make ten very difficult to visualise, and if you're not having periods then it won't be escalating.

    I had a similar situation after diagnosis - the local hospital put me on Depo Provera - I had 2 injections then stopped, and asked for a referral to an endo specialist. The specialist wanted to do another lap - by the time my surgery came my periods still hadn't restarted so guess what? All they found was scarring.

    Periods restarted a few months later and the pain became loads worse - went back to the specialist and asked if the depo could have suppressed the endo so it couldn't be seen and he said he doubted it but agreed to do another lap. Of course, there was endo everywhere - he was quite surprised but I wasnt, as this seemed quite logical to me!

    If you want a second opinion, go to an endo specialist - lots of gynaes don't know as much as they should about this disease, especially visualising it in surgery and so on.

    I really hope you get some answers soon - this disease has destroyed my life and the doctors have no clue what we go through.

  • Thank u ill ask them that

  • Really feel for you. I was alson on zoladex for 4 months which was great but as soon as I took hrt the pain returned. When I told gynae he said it can't be endo. Just wish they would accept that we are all different and just cause something is supposedly proven to work doesn't actually mean it isn't endo when it doesn't work. My last appt my gynae wanted to send me back to the gp to be referred elsewhere. However, having broken down and having an amazingly supportive mum convinced them to do another lap. So now waiting for appt. In total pain..

  • Yeah thats all i keep getting cant be endo cos of this and that uve had it once cant get it again but alrwady had three laps to remove it. There really isnt enough evidence out there for them t say anything definate which is what gets me so mad about it all.

  • Thank u ladies f the help ive jotted some notes down and have decided t go c both specialists and not cancel one of them then hopefully if i dont get anywhere with one i might with the other. Ill keep u posted but anymore advice would be greatly accepted x

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