Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Women's health

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention.

Endometriosis, menopause and biopsy

6 replies

Missmoo123 · 27/10/2023 13:10

Hi, this is my first thread as I can't seem to find help with what I need and feel like I'm going mad.

Bit of background, I'm 32 with 2 children. Straight forward conception and births. After second child I decided to start contraception- implant in my arm which was a nightmare so had that removed and then copper coil inserted. I had trouble with this for a few years with periods getting worse, pain during and after sex, lots of back pain, fatigue etc. I had been going to the doctors and was referred to gynae team. Ultrasounds showed cyst on my left ovary which gradually got bigger but I was told it's fine and I don't need to worry about it. Then had coil removed to see if that helps- spoiler alert, it didnt.
Had an MRI in May 2022 but didn't get results until a routine follow up a year later where they informed me I had severe deep endometriosis and they offered me prostap injections to put me into menopause to try and stop the lesions getting worse whilst I waited for surgery. I started the prostap and have had the monthly injections since March 2023. In June I was given HRT as the menopause was a nightmare. I was also put on waiting list as my pain is really bad in my lower back, hips and just knocks me off my feet.

The strange thing is that I still have periods and irregular bleeding. I have trouble with opening my bowels and even passing wind now. Recurrent urine infections too.

I discussed this with gynae and was told that the endo has basically glue my ovary to my bowels and is all around the bowels which is why its causing me issues going to the toilet. Surgery obviously has the risk of ending up with a stoma.

Last appointment on Wednesday when I thought it would be about surgery risks and consent actually went different. The gynae said she wanted to do a urine test which showed that I had protein and blood in my urine. I knew about the blood in urine and had mentioned that to them. Gynae asked nurse to send the sample to lab but nurse said she had already binned it.
Then the gyna dr wanted to do a uterine biopsy. I said yes, and this was done there and then with no anaesthetic. I was told she is not worried as I'm not overweight, have had children etc.

I just wanted to know how other people have managed this sort of 'care'? I've been fobbed off over and over again and just feel like a Guinea pig. Since the biopsy I've had tenderness and pain. Some bleeding too.
Generally feeling fed up and exhausted.
Also, I'm confused as to why they said its endometriosis without doing a laparoscopy? Has anyone had similar experiences? How did it work out for you?

I feel like this constant pain is taking over life and I'm off sick from work after having had to cut my hours down to part time and still struggling to get on with life.

Will the biopsy be normal? Should I contact them or expect no news is good news although that wasn't the case with the MRI.

OP posts:
Missmoo123 · 27/10/2023 18:47

Boost

OP posts:
Lovemusic82 · 28/10/2023 22:11

Not exactly the same but I’ve been having ongoing issues since my early 30’s getting worse after 35, lots of endo symptoms yet they wouldn’t do an laparoscopy to conform. I am now almost 42. I had an ablation to try and stop my periods and was sterilised at the same time but this did not help and over the last year my symptoms have got worse. They have now agreed to a hysterectomy and I am so relieved and I hope this will solve most of my issues.

It makes me so angry that they spend so much time messing around instead of finding the correct cause and sorting it (with surgery if needed).

I am waiting for another biopsy before I can be out on the waiting list for surgery, not sure why I need this as everything’s being taken out anyway. Just more waiting around whilst I’m in almost constant pain.

I hope you get some answers and everything gets sorted for you.

Missmoo123 · 29/10/2023 14:37

Thank you for your reply. I think the waiting for surgery is quite frustrating right now. But I also feel like they keep skipping steps and slowing everything down.

Right now I'm still bleeding, got an awful flare up and bed bound. Can't carry on like this much longer

OP posts:
Autumncalls · 21/08/2024 20:21

Hi any updates from either of you please?

Hi OP. I am in exactly the same position. I have stage 4 endo. Noodles about 5cm attached to my rectum and womb. Been referred to a specialist down south (north east girl) as it’s attached to my sphincter muscles and if touched will permanently damage and need a stoma. They want to start me on prostap, and tibolone - as like you I’m so scared of the side effects, but also, don’t want to have major surgery if there’s anything else I can do. I researched so much and started a gluten dairy free diet which was recommended to ease symptoms. Have to admit I doubted it but has helped somewhat (a little). I’m 37 years old and the thought of having a total hysterectomy (with all the potential future complications is terrifying). But I’m also in agony 3/4 weeks.

is a total hysterectomy at 37 ok, worth it, side effect. So many questions with little gyne guidance similar to OP X

Lovemusic82 · 21/08/2024 20:49

Autumncalls · 21/08/2024 20:21

Hi any updates from either of you please?

Hi OP. I am in exactly the same position. I have stage 4 endo. Noodles about 5cm attached to my rectum and womb. Been referred to a specialist down south (north east girl) as it’s attached to my sphincter muscles and if touched will permanently damage and need a stoma. They want to start me on prostap, and tibolone - as like you I’m so scared of the side effects, but also, don’t want to have major surgery if there’s anything else I can do. I researched so much and started a gluten dairy free diet which was recommended to ease symptoms. Have to admit I doubted it but has helped somewhat (a little). I’m 37 years old and the thought of having a total hysterectomy (with all the potential future complications is terrifying). But I’m also in agony 3/4 weeks.

is a total hysterectomy at 37 ok, worth it, side effect. So many questions with little gyne guidance similar to OP X

I had my hysterectomy in March, mine was rushed through as they couldn’t take a biopsy and I had cancer symptoms. My surgery was done vaginal key hole assist, I kept my ovaries. My recovery has been good. They didn’t find any endo so my surgery was pretty easy. I got the all clear for cancer ten weeks after my surgery. Obviously if they are taking your ovaries you will be put into menopause and put on HRT, it can take a while To get this right and for things to settle. Do join hysterectomy sisters uk on Facebook, it’s a great group.

Autumncalls · 21/08/2024 20:57

Thank you so much for the reply. I’m so pleased it went well for you x

New posts on this thread. Refresh page