Rose

Age at interview: 44

Brief Outline:

Rose developed uterine, bladder and bowel prolapses after the birth of her second child. She has been successfully self-managing with a vaginal pessary for the last four years. Rose thinks she will probably need to have a hysterectomy and front and back wall repairs after the menopause.

Background:

Rose is a researcher. She is married and lives with her two children, aged 7 and 11 years old. She identifies as White British.

Condition: pelvic organ prolapse

More about me...

Rose developed prolapses of her uterus (when the uterus slips down into or out of the vagina), cystocele (prolapse of the bladder into the vagina), and rectocele (prolapse of the rectum into the vagina) after the birth of her second child. At first, she noticed a bulge into her vagina and difficulty passing bowel movements. After seeing her GP about her rectocele symptoms, Rose self-referred to a women’s health physiotherapist. With limited improvement from physiotherapy, Rose was then referred to a gynaecologist who confirmed she had three prolapses. The symptoms of her uterine prolapse include a heavy dragging sensation and feeling that her cervix is low. She has also found that the contraceptive coil does not stay in place. Rose says it is only recently that she’s started to experience symptoms of her cystocele, such as slight urine leakage, urgency and a feeling that her bladder is not completely empty.

Across many of the healthcare professionals that Rose has seen – including GPs, women’s health physiotherapists, and gynaecologists – she feels that there has been a lack of knowledge about pessaries. For example, Rose was told by the gynaecologist that she was “too young to have a pessary” and instead was offered a hysterectomy. Rose hadn’t decided at that point whether she wanted another child, and the gynaecologist “sent me on my merry way”. Rose found the gynaecologist’s “whole attitude and approach was stuffy and old fashioned”. It was through Rose’s own research, particularly via American online forums, that she first learnt about the range of pessaries available. She identified a urogynaecologist with an interest in pessary management of prolapse and, through the NHS e-referral system ‘Choose and Book’, was able to see a specialist who helped Rose find the type and size of pessary that worked for her.

Rose has been successfully self-managing with a pessary for the last four years. It is important to her that she can take the pessary out and refit it herself. The amount of time that Rose wears the pessary has increased; at first, she only wore it when very active, but now she needs to wear it most days. She doesn’t wear the pessary at night time. Rose feels confident self-managing her pessary but knows that not everyone would be. She thinks it is a missed opportunity that women’s health physios are not always used as a source of information and support for patients about pessaries. She challenges the view that pessaries are only suitable for older women.

For the first two years after being diagnosed, Rose says she was “all consumed” by her prolapses and it had a big impact on her life. She stopped exercising and spent a lot of time looking online for information. Whilst she feels fortunate to have the skills to do her own research, the downside is that this can be overwhelming. Rose says “you do adapt” over time and that, for her, “having success with the pessary” helped a lot. She has started running again, which has had huge mental health benefits; Rose thinks she will probably need prolapse surgery one day and that the risks of running will become too great for her: “I’m running while I still can”. Because Rose also has endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes), fibroids (non-cancerous growths that develop in or around the uterus) and adenomyosis (where tissue that normally lines the uterus, called endometrial tissue, grows into the muscular wall of the uterus), she thinks that she is likely to need a hysterectomy after the menopause. At that point, Rose feels that it will be important for her to see a urogynaecologist who has the expertise to help her to manage her prolapses following this surgery. The lack of specialist urogynaecologists is something that Rose feels should be addressed, and she thinks every NHS hospital should have specialists in this clinical area.

Rose encourages “women to speak up and be more assertive and proactive about” getting support with prolapses (“you don’t have to put up with it”). She also thinks the healthcare system “does need changing” to support women and listen when they do raise concerns. Rose would like healthcare professionals to recognise that the relationship between the severity of prolapse grade, its symptoms, and its impact on a person (including their mental health) isn’t straightforward.

Rose found that developing urinary symptoms associated with her prolapse is connected to entering perimenopause.

Well, I think what I’m anticipating is that as my oestrogen, natural oestrogen levels drop, everything will drop a little bit more. So yeah, so I guess, you know, I don’t feel like I’m there yet but I’m certainly starting to get some symptoms of perimenopause and I do wonder if the sort of urinary symptoms are linked to that. But yeah, my general understanding is that, you know, prolapses will-, existing prolapses will get worse with menopause and with the oestrogen levels dropping off. And, and in fact, you know, prolapses can occur during, during the menopause because of the drop of oestrogen and that laxity that happens with all the tissues when the oestrogen gets low. So, yeah, that’s my understanding and you know, certainly I do feel that the urinary stuff is probably linked to that.

 

Rose researched non-ring options online after a ring pessary didn’t help.

I got the bit between my teeth as it were and, and started researching, particularly around self-management with pessaries. I did go to the GP and they did fit a plastic ring pessary which didn’t really work for me because actually my uterus prolapse just came through the middle of it so it didn’t really help much. And then with my own research, I realised that actually they’re a load of rubbish, those plastic rings and they, they’re not good for anything really. And I did sort of ask about different types of pessaries and the GP was like, “I don’t know” [laughs]. So, at that point, through sort of various online forums and Facebook pages and things, I started sort of increasing my own knowledge really. It was quite difficult because quite a lot of the stuff is quite American based, so sort of Facebook pages and things are quite US based, so obviously it’s such a different system in America. But I did end up finding the British Urogynaecology Society page where they have a list of their accredited units.

 

Rose was told she was “too young to have a pessary” while in her thirties, yet she was recommended a hysterectomy and sent “on my merry way”.

I did ask about conservative management and he said it wasn’t necessary or possible. I was too young to have a pessary which I, you know, with my own research later, I came to know as being absolute rubbish. And at that point, he just offered me a hysterectomy and repair. So, I was 37 at that point. And I said I didn’t want a hysterectomy at that age. Hadn’t decided whether I’d completed our family yet, at that point. And he sent me on my merry way really. And that was that.

 

Rose found her appointments with a physiotherapist and gynaecologist unproductive. After doing her own research, she learned about the sub-specialty of urogynaecology and a wider range of treatment options.

So, when I, so I did the physio for a bit. Didn’t see a huge amount of improvement at that point, although I was still breast feeding and things at that point. So, the physio was very much like, you know, “Things might improve once you stop breastfeeding”. I had an appointment with the gynaecologist, local gynaecologist, obviously I didn’t know at that point that, you know, there are more specialist gynaecologists so, you know, I should’ve been referred to a urogynaecologist, but I wasn’t. It was just a general gynaecologist. And at that point he was very unhelpful. I did ask about conservative management and he said it wasn’t necessary or possible. I was too young to have a pessary which I, you know, with my own research later, I came to know as being absolute rubbish. And at that point, he just offered me a hysterectomy and repair. So, I was 37 at that point. And I said I didn’t want a hysterectomy at that age. Hadn’t decided whether I’d completed our family yet, at that point. And he sent me on my merry way really. And that was that. So, that was, that was the sort of negative experience and also the sort of looking back, you know, just the lack of specialised knowledge really.

 

There isn’t a urogynaecology department locally to Rose, so she asked her GP for a referral further away. It’s important to her that she sees a specialist, especially if she goes on to have surgery.

You know, my local NHS Trust, they don’t have a urogynaecology speciality. So, no-one in my area who has prolapse will see, will, will see a urogynaecologist. They will see a general gynaecologist and I think that’s really odd because this is a condition that affects, you know, huge amounts of women and I am quite shocked that not every Trust has a urogynaecology speciality. It, it feels really odd to me so, you know, I think I’m lucky because basically when I do come to surgery, I won’t be having it at my local Trust because I will be seeing a urogynaecologist to do it. I’m not having a general gynaecologist doing a massive surgery like that. You know, because I will need front and back repair as well as something happening with the uterus whether that be a hysterectomy or a fixation I don’t know. I, you know, because of my other issues with the endometriosis and fibroids, you know, I think I probably will end up with a hysterectomy. But I still want a urogynaecologist doing the front and back and the hysterectomy because I wanna make, you know, I know, you know, I know that the vaginal vault, vault needs suspending after a hysterectomy. Whereas, I just don’t trust that a general gynaecologist would necessarily automatically do that because I’ve read so many times that it’s not done automatically with a, with a hysterectomy. So, I won’t, I won’t be seeing, I won’t be having my surgery in my local Trust unless they suddenly get urogynaecology speciality in there.
 
But how many women are having their prolapse repaired by general gynaecology? I just find it really odd, find it so odd. I mean, the hundreds, you know, especially if you just think of the most sort of simple surgery, you know, like a sling, you know, for a cystocele, you know, bladder prolapse. Still why, you know, they must happen all the time and it just makes me really scratch my head that it’s not done by the specialist, it’s done by general.

 

Rose said her GP didn’t know about other types of pessary apart from a ring pessary. She found other options for pessary types and specialist clinics online.

So, that was, that was the sort of negative experience and also the sort of looking back, you know, just, just the lack of specialised knowledge really. Certainly when looking at the sort of pessary element of it. So, really, I then sort of went about my own research; obviously I am, I am a researcher, health researcher by background so, you know, I got the bit between my teeth as it were and, and started researching, particularly around self-management with, with pessaries. I did go to the GP and they did fit a plastic ring pessary which didn’t really work for me because actually my, my uterus prolapse just came through the middle of it so it didn’t really help much. And then with my own research, I realised that actually they’re a load of rubbish, those plastic rings and they, they’re not good for anything really. And I did sort of ask about different types of pessaries and the GP was like, “I don’t know.” [laughs]. So, at that point, through sort of various online forums and Facebook pages and things, I started sort of increasing my own knowledge really. It was quite difficult ‘cos quite a lot of the stuff is quite American based, so sort of Facebook pages and things are quite US based, so obviously it’s such a different system in America. But I did end up finding the British Urogynaecology Society page where they have a list of their accredited units.