In 2018, I had a hysterectomy. I had previously had the Essure sterilisation but it caused so much problems that I was offered a hysterectomy. Shortly before, CIN2 was noted on my cervix so they said they would simply removed the cervix as well. I suffered from intense left sided ovulation pain (only ovulated from the left) irritable uterus, a spasm on my cervix, abnormal periods (anything from a 7 day cycle to a 42 day cycle) recurrant miscarriages. ( 4 live children)
In 2018 i had removed:
uterus, left ovary, both tubes and cervix (they said the right ovary was shrivalled up and left it in the hopes the hormones would ward off menopause and no menopuase to date)
Fast forward to April this year and I had severe back/kideny type pain and problems urinating. After a trip to A and E as the pain was so bad, i was perscribed pain killers and told to follow up with my GP. Urine sample was all good. Problems persisted and internal vaginal pain started along with the back pain. Urine sample showed no infection, and a a high positive for blood. Was asked to repeat the urine sample, which again showed blood. GP didnt do anything but just kept asking for another sample. It was becoming increasinlgy difficult to pass urine and i had an internal exam which showed a prolapse. Was referedd to gynocology and urology and started on eriodol ( i think - its a pessary)
At the gyn appointment, we discussed trying inserting a plastic/rubber pessary. During the exam, I was in so much pain that the nurse refused to even try the pessary and asked why i said my cervix was removed as she could cleary see it. Explained and she checked my surgery record where it said that it WAS removed. She then failed to add this to her report, so my GP refused to act on it.
At this point im on long term pain killers, walking bent over due to pain. Pain so bad that I come close to passing out. Now have blood, protien in my urine and it is alkaline. (I dont take any supplements that could cause this)
Finally got a scan (pelvic and urinary tract) kidney were all good and nothing there to explain the urine hesitancy and bladder not fully emptying. ( now spending 20 mins every hour in the toilet and at its worst it took 40 mins to pass urine) The nurse said that an US is not an ideal way to check but said she could very clearly see an intact cervix. Also could not locate the right ovary that was left.
So of course I have not had a smear test for the last 6 years as I was told my cervix was removed. And if there was CIN 2 in 2018, how much worse could it have gotten?
I have an internal examine tomorrow and have asked for a smear test to be done if the cervix is there.
The prolapse is 2A anterior and posterior and should only be uncomfortable, but I am in agony most days. Deep iside my vagina and lower back. Legs feel weak and numb on occassion. Loss of feeling on the outer parts of the vagina and can actually feel myself passing urine, i just know i am because i can hear it. Sex is too painful, constant cramps inside my vagina with a shooting pain that goes up the left side.
And if its not my cervix, then what are they seeing? I know of course no one can answer these questions but has anyone had anything similar?
Thank you for reading.
Hi Codes and welcome to the Macmillan Community but sorry to read your story.
Navigating this journey can be such a stressful and challenging time but getting support from others who are dealing or have dealt with the ‘exact same' can help a lot.
This New to Community area is like our reception desk where we look to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)………… so if you care to have a look through THIS LIST you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Do get back to me if you need further help navigating the community.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007