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Edometriosis and PCD Syndrome | MaeveMadden

Edometriosis and PCD Syndrome

  • Hey Ladies..

    Im just looking to see if there is any other queens out there like myself. I was due to have a hysterectomy but had to switch Gynaecologist as the gynae had me on really strong injections decapaptyl for 12 months with HRT and should have been max 3 months. I got lovely gynacologist in Dublin however he was relunctant to do hysterectomy felt i was too young 37. however he did a DNC and Laparoscopy and discovered have endo stage 4 and my overaries are destroyed he said and pelvic congestion syndrome. My thing is he says may need hysterectomy which I dont mind, but while im waiting on next operation until then am 4 week post op and am still in lot of pelvic pain and my legs are aching more than the normal after each work out. Has anyone any advise or been through similar experience. 

    welcome all advise.. 


    thanks ladies (Queens )

  • @Brenda Mckay Oh you poor pet, I have endo stage 3, and a friend of mine has beyond stage 4 if that is possible as well as addenosis and her womb is actually not fully healed since her last c section (5 years ago) and has been loosing blood constantly into her abdomenen!! has had several transfusions and is still waiting on a hystorectomy, she had been bounced from gyne to gyne and eventually got one to let her have it, shes the same age as you. She has a date for June but shes been cancelled s many times now that she doubts it will happen and she could die in the meantime from loss of blood and yet still not an emergency!!

    Public hospital appointments can really be a disaster especially for gyne issues. 

    With my endo I found the best pain relief I was ever given to take home was diffine suppositories. I told me friend about them and she asked her doctor about it and they gave her some and she cant understand why they dont given them more often for that type of pain. Its non addictive so its not like tramadol or the others that they can give, but the relief is unbelieveable. They are anti inflamatories.

    With the pain in your legs, I really dont know, but it could be referred pain or something, could be worth asking others, are you on facebook? endometriosis association of Ireland (sorry Im assuming you are in Ireland) has a facebook group where they are great for helping each other and giving advice/tips. PM me if you need anything x

  • @Anne Hamilton Black  your poor friend that is awful im in Ireland am going to check out the endometriosis of ireland. thank you thats awful how they have let your friend go like this. Women are so looked over when we try to get seen for our issues its a joke. I will ask the doctor about the diffine suppositories. Im taking solpadine and nurofen and paracetoml switching it up but i might as well be eating smarties. I dont have bleeding like your friend but since the op 4 week ago i have bleeding every day but its light so im lucky. 

    I hope your friend will be okay thank you for your advise your a wee pet and a total queen xxx


    sorry for late reply we had a wee trip to local shopping centre to spend girls christmass vouchers in Claire and in to Penneys and H&M was so weird to be able to get out to the shops again. xx

  • @Brenda Mckay Sorry Brenda I never saw your reply!!

    Did you have any luck.

    My friend only text me yesterday to say her surgery for the Hystorectomy has been cancelled and no hint of a new date, she had taken a month of work for it and all, its rediculous!

    Sometimes you need to present yourself to A&E and refuse to leave (sorry to any nurses here that wont agree with this, but its not the nurses fault, its the senior consultants who seem to pick and choose when and who to see)

  • @Anne Hamilton Black hi Anne so sorry for your friend. Unfortunately no luck have to wait to see consultant back up

    on June 10th been very sick today with pain tried today workout I don't last long, I found great support from online like you suggested and a lot suggest low food map plan. I'm really hope my next surgery is not canceled. I really hope your friend can get sorted soon xxx

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