Woman refused hysterectomy because of age and because she doesn’t have kids

[EdinburghFeminist]

Can’t see another post on this but I thought it was shocking. A woman with crippling pain from endometriosis is refused a hysterectomy.
www.bbc.co.uk/news/uk-northern-ireland-56737353.amp

Just came across this too. Silly girl, not knowing her own mind.

Obviously if she was in boy mode it would be a different matter.

I also read that due to an operation last year she has started early menopause. I mean, it should be up to her anyway, but if their reasoning is she may want children in the future, then that's no longer even relevant!

I feel so sorry for her. If it's not bad enough she lives in daily pain and her body has been damaged to the point she can no longer use the toilet, she now has a massive amount of mental stress on top of this trying to fight for her right to a hysterectomy.

The poor woman is being affected in so many awful ways, she is taking morphine daily, needs a catheter, needs to use a wheelchair if the pain makes it necessary. She fully understands the implications of the surgery, she has had the relevant discussions with her husband, what the hell else does she need to do??

I saw that... some very obvious flaws in consistency of approach.
She should have said she was a man.

That is such a sad read, all she is seen as is a baby making machine. You get the impression that this is something that she has spent hours deliberating over, yet she is still told that she doesn't know her own mind.

Are there different treatment guidelines between the 4 nations?

This made me really angry, sounds awful for her and I hope her doctors see sense.

That's an upsetting article, and I'm very sorry for her. But it's worth remembering that the hysterectomy might not help her. In fact, as she says she has severe disease through her bowel and bladder, and hormone blockers clearly aren't helping her just now, the prognosis with a hysterectomy may not be terribly promising. The cases in which it can help tend to be those in which a) most or all of the pain stems from the uterus, not elsewhere and b) all the endometriosis across other locations can be removed entirely, leaving none behind to restart the process again.

It's hard for people to feel they might be being denied the magic bullet because of perceived paternalism on the part of the medical community. But it's worth remembering that hysterectomy fell out of favour as the treatment of choice for endometriosis, precisely because specialists were finding they were treating women who remained rather ill and in significant pain, who had also had unnecessary full hysterectomies and who then had to deal with the negative consequences of that, on top of their ongoing endometriosis. It's also worth bearing in mind that doctors used to underestimate the role of the reproductive system in ongoing health - back then, they viewed hysterectomy as an operation that has no negative consequences whatsoever once childbearing was over. In fact, they were massively understating the downsides of hysterectomy and overstating the potential for cure. This was real paternalism. Now they've realised that this approach does harm, it's understandable that they are reluctant to perform hysterectomies in younger women with this particular profile, who may find that they are back at square one afterwards but with added problems on top.

This is not to say some patients can't be helped by hysterectomy, if their particular circumstances are suitable. I hope in future doctors will get better at identifying which patients should go down this route and which shouldn't. I always wonder whether there's some clue in the pathology.

I wish that journalists would be a little more responsible in writing this sort of emotive article when they haven't really understood the likely background to the decision.

I hope that Hannah finds some sort of treatment that helps her.

That is so sad.

And the saddest thing of all is that hysterectomy isn’t a cure for endo. What she needs is excisional surgery to cut out all of the endo. Removing the uterus can only tackle the endo affecting the uterus (this is called adenomyosis, and it’s not the same as endo). From what’s in the article, she has severe infiltrating endo all over her pelvic cavity. If she doesn’t get proper surgery, she may well continue to suffer

Cross post with areyou - agree with your post.

@AreYouCursed

That's an upsetting article, and I'm very sorry for her. But it's worth remembering that the hysterectomy might not help her. In fact, as she says she has severe disease through her bowel and bladder, and hormone blockers clearly aren't helping her just now, the prognosis with a hysterectomy may not be terribly promising. The cases in which it can help tend to be those in which a) most or all of the pain stems from the uterus, not elsewhere and b) all the endometriosis across other locations can be removed entirely, leaving none behind to restart the process again.

It's hard for people to feel they might be being denied the magic bullet because of perceived paternalism on the part of the medical community. But it's worth remembering that hysterectomy fell out of favour as the treatment of choice for endometriosis, precisely because specialists were finding they were treating women who remained rather ill and in significant pain, who had also had unnecessary full hysterectomies and who then had to deal with the negative consequences of that, on top of their ongoing endometriosis. It's also worth bearing in mind that doctors used to underestimate the role of the reproductive system in ongoing health - back then, they viewed hysterectomy as an operation that has no negative consequences whatsoever once childbearing was over. In fact, they were massively understating the downsides of hysterectomy and overstating the potential for cure. This was real paternalism. Now they've realised that this approach does harm, it's understandable that they are reluctant to perform hysterectomies in younger women with this particular profile, who may find that they are back at square one afterwards but with added problems on top.

This is not to say some patients can't be helped by hysterectomy, if their particular circumstances are suitable. I hope in future doctors will get better at identifying which patients should go down this route and which shouldn't. I always wonder whether there's some clue in the pathology.

I wish that journalists would be a little more responsible in writing this sort of emotive article when they haven't really understood the likely background to the decision.

I hope that Hannah finds some sort of treatment that helps her.

Spot on

@AreYouCursed

That's an upsetting article, and I'm very sorry for her. But it's worth remembering that the hysterectomy might not help her. In fact, as she says she has severe disease through her bowel and bladder, and hormone blockers clearly aren't helping her just now, the prognosis with a hysterectomy may not be terribly promising. The cases in which it can help tend to be those in which a) most or all of the pain stems from the uterus, not elsewhere and b) all the endometriosis across other locations can be removed entirely, leaving none behind to restart the process again.

It's hard for people to feel they might be being denied the magic bullet because of perceived paternalism on the part of the medical community. But it's worth remembering that hysterectomy fell out of favour as the treatment of choice for endometriosis, precisely because specialists were finding they were treating women who remained rather ill and in significant pain, who had also had unnecessary full hysterectomies and who then had to deal with the negative consequences of that, on top of their ongoing endometriosis. It's also worth bearing in mind that doctors used to underestimate the role of the reproductive system in ongoing health - back then, they viewed hysterectomy as an operation that has no negative consequences whatsoever once childbearing was over. In fact, they were massively understating the downsides of hysterectomy and overstating the potential for cure. This was real paternalism. Now they've realised that this approach does harm, it's understandable that they are reluctant to perform hysterectomies in younger women with this particular profile, who may find that they are back at square one afterwards but with added problems on top.

This is not to say some patients can't be helped by hysterectomy, if their particular circumstances are suitable. I hope in future doctors will get better at identifying which patients should go down this route and which shouldn't. I always wonder whether there's some clue in the pathology.

I wish that journalists would be a little more responsible in writing this sort of emotive article when they haven't really understood the likely background to the decision.

I hope that Hannah finds some sort of treatment that helps her.

That’s very interesting, thank you for sharing. I actually read (and shared here) an article last week on the other potential roles that the uterus plays so I should have thought of this but didn’t when I read the article. I take your point about it not always working, that’s very interesting. However it still raises the question about how people are treated differently when asking for the same thing but for different reasons, there is evidence to suggest that a hysterectomy might not cure gender dysphoria too, and removing it would also bring the other issues that would affect the woman in this article too. Perhaps however it is this woman who has the doctors following the right path rather than FtM patients asking for SRS.

it's worth remembering that the hysterectomy might not help her.

Agree with AreYouCursed that it's not a given that the surgery would help her and I'd be apprehensive about further adhesions if I were in her position. (Although I'd hope that some shared decision-making discussion has already taken place.)

AreYouCursed - really interesting, good to get a more rounded picture.

If the doctors have concluded a hysterectomy is not going to alleviate the problems in this case, for the reasons very helpfully explained above, they should be detailing this to the patient in the clearest possible terms, with examples. People shouldn't have to read the reason online.

The same thing happened to me in 2017, but for fibroids causing horrendous, debilitating bleeding and causing me to relapse into anorexia (that I had just fought my way out of). I was offered all manner of hormones that caused me massive mental health issues (I have bad MH anyway, taking hormones exacerbate them) and refused a hysterectomy time and again because my "husband might want you to bear his children". I was 38 at the time and had never wanted a family.

In the end I paid for it - and even then the consultant looked to my husband for sign off on me having my malfunctioning uterus - one that bled heavily and painfully for months and months, and flooded on far more occasions than I care to remember - removed.

I have so much sympathy for Hannah, I was very lucky that I was able to self fund the operation I needed (and still met resistance). I shouldn't have had to go outside the NHS for this necessary treatment, and nor should any other woman.

She has not said the magic words, which vanish all ordinary medical concerns, policies and practice out of the way.

A hysterectomy isn't going to cure the endometriosis in her bowel, back and bladder.

"Endometriosis affects a lot more than just your ovaries and your womb," she said."Mine has spread to my bowel, it's right through to my back and it has also completely damaged my bladder to the point that I can no longer use the bathroom myself.""

@Beowulfa, I agree, definitely, and it's true there are some terrible doctors out there. But I wouldn't like to make assumptions about what has happened here.

It may be that Hannah has a terrible gynaecologist, who either isn't taking the proper steps or is very bad at communicating with her.
But - and this isn't a comment on this particular case, more of a general observation - I do think it's well-established that patients can miss entire important chunks of discussion in certain circumstances - for example, when they are in a desperate situation, in constant severe pain, struggling to cope with the severity of their daily symptoms, probably functioning on very little sleep because of pain and worry at night - all this is a recipe for disaster when a difficult conversation about treatment options takes place and the patient is not firing on all cylinders, simply because their brain is behaving in an entirely normal way for a person in that difficult situation. I think it does happen that entire chunks of conversation simply don't lodge in their memory, or they can entirely reverse the sense of what was said, and believe they were told the exact opposite.

This is why I feel the BBC has a lot to answer for here. They haven't done any service to Hannah - they have put her in the public eye at a time when she is under huge pressure and correspondingly vulnerable. They haven't been fair to her doctors, who of course cannot answer the allegations without breaching confidentiality. They have potentially done harm to a lot of endometriosis sufferers, some of whom will believe that there is a cure for this, and that doctors are deliberately withholding the cure, even at cost of allowing women to continue in daily severe pain, doped up on opiates, in wheelchairs and catheterised - simply because of an ideological stance that treats us all as 'baby making machines'. I'm not saying treatment hasn't got a very long way to go, and there are a lot of problems with the system as is, but this sort of disinformation and distortion does us all harm.

OP, yes I agree there's a wide gulf between the current approach to hysterectomy in the treatment of endometriosis versus gender dysphoria. I'm guessing it's because the surgeons are relying on the accuracy of the experts in an entirely different field to assess whether the upsides of surgery outweigh the downsides. I have a feeling this may result in a lot of buck-passing later on. I've noticed similar in the approach to GnRH analogues (hormone blockers) in gynaecology - there was a time when they were the wonder drug, and it was thought that the benefits definitely outweighed the downsides. Now the negative effects are being regarded more seriously and I have a feeling prescribing has dropped, though I don't have stats to back this up - it's a feeling based on what I'm being offered as a patient and the fact that I'm no longer being encouraged to go down that route.

patients can miss entire important chunks of discussion in certain circumstances - for example, when they are in a desperate situation, in constant severe pain, struggling to cope with the severity of their daily symptoms, probably functioning on very little sleep because of pain and worry at night

Agreed. It's well known that there are some patients who react with shock and claim not to have known about a diagnosis when it's mentioned. There will be a clear documentation of the diagnosis in the records and all of the appropriate referrals where the treatment and management pathway was discussed along with that person's preferences and responses. The patient nor the family is being deceitful, they genuinely don't recall the diagnosis although, on prompting, they will recall the appointments and discussions.

Sometimes people can have been given literature that says, So, you have [X]. What happens now and put in touch with patient ambassadors or support groups. But, for some people this is so at odds with their experience of themselves that it doesn't seem real.

As per AreYouCursed people can be overwhelmed for continued time periods, it's not just a one-off. This is one of the heartbreakingly sad themes that recurs in Court of Protection hearings, where families take action because they claim that medical staff have no real understanding of a patient's condition. The staff in question will testify about the number of interactions they've had, along with other detail. The judge or relevant parties will ask why they didn't communicate that to the family, and the staff are left to describe the number of calls and conversations that they had with various family members - but a lot of detail got lost when particular family passed along that information to others (or didn't because family relationships ).

Yeah, I'm not convinced that the doctors are trying to be problematic here, people in pain do become fixated on things they think might help.

People requesting surgery and hormones often aren't treated the same but that's because the treatments aren't evidence based and are strongly dictated by political ideology, which isn't really a great standard for medicine.

Ah, above should say, requesting for gender related issues.