I am 29 and was diagnosed with endometriosis about ten years ago , since then i have 5 operations to remove endo,adhesions etc , Just over 3 years ago i had a hysterectomy as this was the last resort however i have been left in severe,constant pelvic pain ,bladder pain, rectal pain , i have trouble with holding urine and recent test showed that my bladder doesnt empty fully i have been put on long term antibiotics
My specialist has basically washed his hands on me .My gp thinks i have alot of scar tissue and have irrepairable nerve damage in my pelvic area,My legs regularly give way due to this and walking is not easy anymore.I see a pain management team and am on alot of medications that do help to control the pain without them i would end up hospitalised due to the pain.I do not mean to go on and on ,But would love it if there is anyone out there who can understand how massive an impact pain can have on somebodies life
Sorry for the long ramble
xxxxx
Written by
weeble29
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I am so sorry to read your story. Everyone's journey with endometriosis is unique and I think that makes it a challenge - when it has such a massive impact on your life as it has for you, it is extremely hard. It sounds like you have had a lot of complications to handle - not only is this physically demanding, it is emotionally draining. I think you were very brave to post your story - I found it very moving to read.
I am 39 and endo has also had a massive impact on my life. Like you, I have had bladder complications - these have been very rare and pretty horrid! Ultimately, these have led to me taking medical retirement from work - this has been devastating too. Sometimes I feel embarrassed even to say what has happened to me because it sounds quite dramatic. And I look so well too so some people don't get it - it is so invisible.
I have been volunteering for Endo UK for some years now and often I meet ladies who have had a challenging time - it is very, very hard. It is ok for us to acknowledge this can be a hard disease to manage. It has taken me a long time to stop feeling guilty about the impact endo has had on my life. The support of other women with endo has made such a difference to me.
If your consultant has washed his hands of you, are you able to see someone else? Sometimes a second pair of eyes can be helpful. However, I also know from my own experience that sometimes all that can be done has been tried - this is also difficult to come to terms with. But second opinions can be useful.
I hope you have some support around you. Please say if there is anything you need and I hope we can help you.
Sorry to hear how much you've suffered and still have no relief.
I've had a rough time too and I had a radical hysterectomy at 35 due to endo. Within 6 weeks the endo returned and I had that removed and that returned and the story goes on. In total I've had 10 major ops for endo.
My last few ops have been successful but I had to pay a private doctor called Mr Trehan and he is amazing. endometriosis-consultant.co...
He preformed a radical excision which basically skins your pelvic insides, takes away everything down multiple layers from the pelvic wall bladder bowel etc. It's a painful op and takes about 5hours, but not as bad as a hysterectomy. He then fills you full of fluid to stop and adhesions. I've never had any regrowth or pain in the areas again.
I did have pain under both ribs which has needed another two partial excisions further above the original areas but no adhesions were found on re entry.
I'm not a 100% pain free but perhaps 98% and I have my life back.
He is soooo sympathetic to endo and has never dismissed my pain and always looked after me extremely well in compassion to the NHS. I did have to get a loan out to pay but it's the best money I have ever spent as I was in sheer agony and was being only offered pain management by the NHS after seeing numerous so called specialists around the country.
Thank you both ver ymuch your lovely replies,It is a great comfort to me knowing that i am not alone and there are others who understand just how horrible this can be.
Carol,Thank you for your reply,like you i find it quite hard to discuss all that has happened ,This is such an invisible illness although one that is very dibilitating , i have been unable to work for some years(not for want of trying though).I have a very supportive partner who has been an absolute rock throughout everything.
I do at times feel guilty for putting all of this on him though.
I have a visit with my gp next week and will speak with him about seeing a new gyneacologist for a second opinion ,I am finding it hard to come to terms with the fact that there is no magic cure and this is more than likely to be a long term thing i have to deal with.
Iornam.,Thank you for your reply and advice ,I would love too see a private consultant unfortunately at the moment i am not in financial position to do that , I am so glad that after everything you have been through you have found someone who is able to help you and has been able to help you get a better quality of life,
When i had my hysterectomy my uterus and cervix were removed they left in my ovaries,with in 6 months i was in so much pain i was operated on again and they found that my bowel,bladder and intestine were all stuck together , they were seperated as best as was possible,and all endometriosis was apparantly removed, however i woke up from the surgery in agony and since then the pain has not stopped,As well as endometriosis , pelvic adhesions etc i have also recently been diagnosed with Interstitial cystitis and am awaiting an appointment to have a Cystoscopy i am petrified of having anymore procedure's and right now am very anxious about the future
Thanks again for your replies and i do very much appreciate any advice you may offer xxxx
Hi Weeble29, I had a radical hysterectomy when I was 29 years old. I had various operations for a couple of years before the hysterectomy, however the endometriosis was too servere. I also suffer from autoimmune disorders which had a major effect on my healing after each operation. All operations failed and everytime I was opened up I would lose a reproductive organ. It was a very hard, sad and stressful time in my life and I have only (if only slightly) have come to terms that I will not have children. I have adoption and fostering but my health is too poor for me to do anything like. I am now 45 years old and aunty to my brother's children...yes there is a gap in my life but there is absolutely nothing I can do about it. It is a challenge like any disorder or disease and yes sometimes the doctors, consultants, specialist do give up...for some of us they seem to not have any answers.
I had a hysterectomy 5 years ago, was pain free for a year and felt fab! Then the pain returned and I have pain in my pelvis which radiated down through the groin to my upper thigh. Have had lap and they could find no endo! Have had an endoscope, (clench girls, clench!), and my bowel is healthy and lesion free. Gynea said it was probably nerve damage and has referred me on as he has no idea! I sometimes wonder if it is all in my mind and maybe I am going mad! Doctors look at me as if I am an attention grabbing hypochondriac!!! I am not and just wish they could find out why it hurts so much! Also my legs feel weak sometimes too!!!!!
Wish someone would collate all this info so we could have more of an idea!
Also is depression a side effect of this condition as I know loads of girls who have that too!!!
Take care and . . . . . remember to keep smiling!!!!!!!!!
Hi girls i too am soo glad that there are others out there suffering the same plight as me.. I had a hysterectomy at 28 and my overies removed three years ago and have still been in pain. That would be easier to cope with if we wern't treat like hypercondriacts ! ive just had my firth lap and they found my fallopian tubes that should have been removed with the rest of it .. unimaginable to believe i now have very little faith in these consultants/surgeons and if i hadn't kept insisting something was wrong they would have never found out.
Hi all and thank you for the replies it does mean alot to me,
They have all struck a chord with me and feel that some of the posts i could have wrote myself as alot of my symptoms are very similar to the ones you have all listed
Kait i suffer with depression ,which began when the pain became unbearable my dr saiid that often chronic pain and depression go hand in hand.At times i find myself coping quite well at times ,however sometimes i get quite down about everything and feel so guilty that i am letting my and children down ,luckily my partner is very supportive and understanding and i do have a fantastic gp who does his best to get me any help he thinks i need.
I am no longer able to work and have had to claim disabilty benefits ,
Now i have found this site and am so glad i did ,I look forward to geting to know you all better
i have had a recent hysterectomy through endrometerios and adhesions ..cannot have hrt for 6months they say to make sure it dies of but when the operated they find it outside the womb can this have spread as im having problems with my bladder it doesnt empty properly but the are not bothered but i am ...and will it come back ..im none no wiser cheers
and if men are now being diagnosed the not having estrogen is not gonna help is it
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