What has happened to being kind - Pelvic Pain Suppo...

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What has happened to being kind

Finew1ne profile image

Hi I’ve been unable to sit down for fifteenth months I finally spoke to a gynaecologist yesterday who said he had never heard of anyone prolapsing after a hysterectomy! Worrying he finally agreed to do my examination sedated as I had a stigmoid & spasmed & was 3 months in bed in excruciating pain(suicidal almost the thought was there more than once).I have to take amitriptyline to be able to sleep as whenever I lay down my body pulls from the anus like elastic bands. I’m amazed at how long I’ve had to wait for an appointment & then for the person who’s examining me doesn’t know anything about post hysterectomy prolapse & he was so abrupt & said even if you have I don’t know what I can do about it:

13 Replies

Sorry to hear this. I've heard of vaginal vault prolapse post-hysterectomy and I'm not even a doctor. The way you were treated is appalling and unprofessional. I hope you can find a better gynae soon. I wish I could offer you more than just my commiserations!

Oh no!!! Do not stand for this!! I don't care if it's national health or private get a second and if needed a third opinion....

Finew1ne profile image
Finew1ne in reply to kalecolbe12

Thankyou so much because of everyone on here advising me I grew a pair & saw my go a woman & she was not horrid thank god! I didn’t cry as wanted them to see the articulate person I really am not the distraught wreck I’ve become

I had similar situation with a male doctor. I now have an all female team of doctors who are much more empathetic and understanding of female pelvic pain.Demand to see a doctor of your choice this is your right, hope you get the help and treatment that is right for you.

I’m so sorry to here about your experience but unfortunately it’s not as uncommon as you would think. Women are treated appallingly.

I have had a similar experience were a gynaecologist dismissed my pain after prolapse repair and implied I had a mental health issue! He completely stonewalled me, perhaps concerned I’m going to sue him. Get a second opinion. I saw two gynaecologists and two pain specialist before I got some answers.

I had similar symptoms to you in that post surgery I could not sit down without being in excruciating pain. In fact moving at all was painful. The pain is around my vagina anus and into my lower back. Bowel motions are painful!

I had an mri pelvis because I insisted. I have damage to my pelvic floor muscles which basically hold everything up. My puborectalis muscle is detached from my pelvic bone causing my uterus to deviate to the right. There is some pudendal nerve involvement but my pain specialist doesn’t know which branch.

I tried various painkillers. What has helped me is nefropam during the day and Amitriptyline at night. It’s not perfect but the pain is in the background. I’ve seen a pelvic floor physio which has helped too.

I’m only just beginning this journey for six months I laid on my bed with a hot water bottle and had to steel myself to get up and move about. I contemplated suicide on several occasions. Even my daughter, a surgeon, thought this was mostly in my head.

Make a complaint about that gynaecologist. I had my surgery in Ireland. I got second opinions from dr hooper (gynaecologist) and dr hodgkinson (pain specialist) both based in Nottingham. I did go privately and paid to see them but at least I was able to see them quickly. I’m lucky I was able to do that.

I’m not fixed. My life has changed. Before I was employed full time as a healthcare professional, cycled, walked, swam, practiced yoga and had an active sex life. I’m able to walk and swim a little and can now do a few simple yoga exercises to try to strengthen all the muscles around pelvic area but I’m a long way from my previous life before surgery.

I know what you are going through. See if you can find someone who does radiofrequency ablation to your pudendal nerve. It doesn't really matter what branch of the PN is affected. I have learned my dorsal branch is the primarily affected branch, but others as well. I educated myself on anatomy. It is so sad we haver to do this. My average pain before the radiofrequency ablation was 8-10 and now it usually 0-3, unless I have done something to aggravate the nerve (like sitting in the car for an 11 hour trip). This has been a game changer for me. I have written about the interstim earlier, it was a great help for about 2 years and then just stopped working. Radiofrequency ablation is minimally invasive, no implants, your nerve bounces back. They say it can work for up to 2 years, for me 6 months. My nerve was damaged by transvaginal mesh so it has a harder time. I hope you get help for your issues!

Have you been in touch with the surgeon who undertook your hysterectomy? To suggest that you can't get a prolapse when you have had surgery in your pelvic area is just ridiculous. If everything has been pulled and moved, then of course it's possible, especially if your pelvic floor muscles were weak to start with. I've just been told I have a bladder prolapse and if it's any consolation it's not just men that are indifferent. The female pelvic physio who examined me gave me a very rough almost brutal internal examination which hurt so much that I am still recovering 5 weeks later. The effect on our mental health from all of this is vastly underestimated. I am also on Amitriptyline and it does help somewhat, especially with sleeping. I hope you find some answers. Good Luck.

Finew1ne profile image
Finew1ne in reply to SarahA2021

I’m not taking it anymore I went to my gp for the 1st time in sixteen months she couldn’t believe he said it said to have scan when I get my appointment & to carry on doing as I am out of 15 months 5 I’ve spent in bed no more rubbish am I taking! I can’t see friends family because I can’t travel I gave up my job because I couldn’t drive or lift. I love swimming I know that’s out of reach as a bath is terrible! What annoys me also is although I’ve worked all my life I’m entitled to know hello with finance’s. Today is a good day so I’ve made myself go out first time in a long time. It feels like the real me has disappeared Thankyou for your timex

yes women can be just as brutal. and after a hysterectomy prolapse CAN accur a sthere is nothing there! what is he doing there as asurgeon..

Wow I am so sorry to hear the way in which you have been treated however it dose not surprise me..if your surgeon has never heard of a prolapse after a hysterectomy then get yourself to another doctor..in fact your sergeant should have warned you of a possible prolapse before your hysterectomy …I was misdiagnosed by my surgeon after a bladder prolapse repair surgery I was on the sofa for 2 years in pain and went to many dr.s and physo …I went to a pelvic pain specialist and was diagnosed with pudendal neuralgia I was unable to tolerate any meds however I am seeing a herbalist and am much better I am still not where I was however I can get on with a new way of life yoga and meditation help the most…find yourself a new dr. I hope this is helpful and God Bless I remember being suicidal but finding the right diagnosis made all the difference then I was able to find the right help..I hope this is helpful

Am so sorry to hear your experience.I was immobile for almost a year after a prolapse operation cut a nerve and have managed 3years on to finally get my fitness back.It is a long road and I'm afraid that the surgeons are often too busy to really care.Go armed with questions to ask them and shout loudly for help with Dr's and surgeon 's secretaries.Have had great help post op from Dr referral for pelvic nerve pain.Talk to a woman doctor always!This forum is helpful too.

Yoga,swimming and very gentle walking helped me.Take all the painkillers you need initially and rest as much as possible.

Take heart.It will get better gradually.

Sending love Sarah xx

Finew1ne profile image
Finew1ne in reply to Meze

Beats me why the man is a gynaecologist he has no empathy! I saw my gp today for the 1st time in sixteen months she believes I’ve had a vaginal& rectal prolapse but needs evidence from internal scan thing to refer me to hospital so that awful man is doing it when I get appointment. They have sent me to a private clinic so the nhs is paying for me to be treated with no care what so ever. Thankyou so much for helping me confirm I didn’t imagine this

Hi can anyone advise me please I have a suspected vault prolapse I’m having a bearable interlude at the moment( always there pulling laying down crutch ache when standing in same position or if on feet for long periods).First contact nurse after brutally leaning her body weight all over me gave me a print of kegel exercises to do.

Would you advise to do them or wait for diagnosis

Thankyou

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