Endometriosis in the News (hysterectomy, urinary tract, bowels)

[Anastasia17]

Hi all.

bbc.co.uk/news/uk-northern-...

Endometriosis: Young woman pleading for hysterectomy

I have just seen this on BBC News. What I found interesting is that she talks about her fight to get the correct treatment, also about the fact that the endometriosis has spread to the urinary system and to the bowels and the damage this illness can cause, which is not very well known outside the endometriosis community.

In my case, my GP told me that 'for endometriosis, NOTHING CAN BE DONE; for interstitial cystitis, NOTHING CAN BE DONE; for the perimenopause, VERY LITTLE can be done.' While the gynae consultant at the local hospital misdiagnosed and blocked my medical care.

We really need more awareness in the medical community, but also outside.

[Nicjane]

Saw this too. There does need to be more recognition that this diseade is not just a disease of the uterus but can affect the whole body and have close relationships to other diseases. It can affect quality of life. GPs and other medical professionals really need to update their knowledge. Sorry to hear your experience i hope things will look up for you reguarding health. All the best and thanks for posting😊

[AllthatGlitters]

Yeah I read this too & there seems to be a lot more in the press about endometriosis. I would like there to be more about adenomyosis too. I feel for the girl as she is asking for a hysterectomy and being refused, think doctors need to stay listening to what patients want x

[Anna_EndoUK Moderator]

Whilst it's really good that this is being discussed on the BBC, it's worth noting that a hysterectomy doesn't cure endometriosis. It can help some people in limited circumstances, but it doesn't help everyone. Unfortunately the endometriosis deposits can continue to grow with or without a womb. I feel like the BBC haven't reported this properly

[Anastasia17 in reply to Anna_EndoUK]

I agree with you Anna_EndoUK. Removing the uterus will not stop the endometriosis from progressing on the urinary system, bowel, diaphragm, etc. A hysterectomy is good for adenomyosis, but not automatically for endometriosis. But she should be listened to and someone to discuss, talk with her and her family.

[Anna_EndoUK Moderator in reply to Anastasia17]

I completely agree with you Anastasia, unfortunately our symptoms and concerns are ignored all too often by doctors :-(. At least having this article on the BBC will (hopefully) make more people understand what we have to deal with and hopefully make some doctors more sympathetic! x

[Moon_maiden]

Hadn’t seen this in the news but wholeheartedly agree the medical profession needs to step up.I had a hysterectomy last year and apart from less pressure in the pelvic area still have the same symptoms as before. This was an endo specialist who made no notes about checking elsewhere apart from what was involved in taking the uterus out. I’m now having to go through the whole process again with a different endo team.

I thought I had it all sussed 🤦‍♀️

I asked if they’d get it sorted properly but closed ranks as apparently the fact he’s backtracked and said he did look elsewhere is fine by the people running the hospital!

[Anastasia17 in reply to Moon_maiden]

I feel for you Moon_maiden. I also had an endo specialist who told me to have a hysterectomy, but by then I was well informed and when I asked him if removing the uterus would cure the endometriosis on and around the bowel, his reply was not so assured, he replied that he would remove any endo elsewhere. By then, I had lost trust in him. Usually, when women have a hysterectomy, a lot (maybe not all) of the medical professionals consider that we are 'cured' and women then get discharged from their care, whereas their symptoms often come back and carry on, but by then, they have no one to turn to and, often, have to re-start their endometriosis care. It's appalling and soul destroying. My endo had, by then, migrated to higher climbs! so a hysterectomy would have only added to more pain and, psychologically, more confusion and more being sent from pillar to post for months on end. More than likely, they would have told me that 'its all in your head, here have some anti depressants, they will make you feel better.'

[Moon_maiden]

I know it’s ridiculous isn’t it. I also had fibroids and enlarged uterus. A gastroenterologist did an MRI small bowel, couldn’t see anything and said it was all gynae, felt like a ping pong ball 😂. I had also told gynae to make sure everywhere was checked as it wasnt a guarantee with getting rid of endo. He gave me a look of don’t teach me to suck eggs, I thought it would be ok 🙄I’ve got an appointment with the same gastro as last year, that’ll be fun 😆 especially as I have a complaint going on re hysterectomy 🤣

Where are you at with everything?

[Anastasia17 in reply to Moon_maiden]

Its absolutely terrible the way they have treated you! I have had a laparoscopy in July where endo was found being widespread to ureter, on and around bowels, pelvic walls, U/S ligaments. I still had bowel bleeding, so had a colonoscopy (which should have taken place in March following urgent referral to local hospital, but they cancelled it for an unknown reason. In the end, I re-organised the colonoscopy at the London Hospital where the lap took place. They diagnosed hemorragic colitis associated with endometriosis. In my opinion, it is endometriosis that has infiltrated the bowels: 3 sites of 3cm each along the bowel were cautherised. it has not stopped the reaction to food. It makes me wonder whether it is not ulcerative colitis (inflammation + bleeding of bowels often associated with endo) because I still react badly to food. But, at least, I carry on with my strict exclusion anti-inflammatory diet , so it removes pain, food reactions and emptying myself daily. I am recovering and trying to get my life back. I am very lucky to have a very supportive husband with me. The GPs are beyond adjectives for their nasty words and letting me cope with everything when I was very ill, they are none the wiser today. Complaints are tough; it's a game for them. Have you complained to the CQC?Take good care of yourself. x

[Moon_maiden]

So sorry you’re going through it. That’s really interesting, I had blood in stools last year and various scans to check for cancer, I’ve lost 30 kg because I’m not eating much and when I do it causes pain. Fluids are the same. I’ve tried cutting various things out but it’s anything that enters the system. He found loads of adhesions including rectovaginal endo, uterosacral ligaments covered, ureters covered, yet apparently it all missed the bladder and bowel!? At lap it was taken off pouch of Douglas and pelvic walls at least where he could get to. Different surgeon.

I’ll definitely be making a note of those for next week. I will also mention these to the dietician when I send the food diary back. I bought some antibiotics that are shown to work for SIBO, they definitely did something as my fuzzy head cleared overnight so an infection somewhere. GP and dietician knew I was taking them, I just don’t know what to do next. Had bloods today as dietician thinks I’m overdoing the supplements 🤣. I don’t think so, results will be interesting. I’ve also had e-coli show in UTI. Kidneys have fluctuated as well.

Thank you for mentioning this, it will be invaluable next week.

As you can see can’t sleep and considering Oramorph. Considering I’ve taken 40mg Amitriptyline and 150mg Pregabalin at 8:30, they aren’t working particularly well 😂

[Dogmad6]

I was very worried when I saw this on the BBC. Can something be done officially by ENDO UK to get it out there that hysterectomy is NOT a cure for our condition.

Personally, I have had hysterectomy and oophorectomy 17 years ago but continue to suffer with endometriosis. I've also had several excision surgeries, the gold standard. Still it persists! This poor young woman is pleading for an operation that will not cure her but could cause her all sorts of long term problems such as heart problems and osteoporosis.

Can the BBC somehow be asked to correct their item please?

[Peenie123]

Everything that everyone has mentioned is sadly so true. I didn’t even realise hysterectomy didn’t prevent Endo regrowing - I just wanted an end to my painful heavy periods and this was the last option. But no mention at all in hysterectomy notes of anything . As below I am in discomfort and sometimes pain and battling to get referred again .....good luck to all xx