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My sister wants a hysterectomy at 21, no previous children. Advice please?(18 Posts)
Hi I am posting for my sister who really needs advice.
My sister is 21, she was diagnosed with poly cystic ovaries and insulin resistance last year. I will give you a brief history:
She started her periods at 10 and quickly put on a lot of weight. She was constantly hungry, craving carbs and sleeping a lot. When her periods came she was in agony and had to take days off school.
She also suffered with depression since starting puberty, at 15 she finally saw a psychiatrist who told her she couldn't be depressed because she wasn't suicidal.
Ever since then she has been plagued with anxiety and depression, too scared to go to the docs incase she gets fobbed off again. She really believes her MH issues are hormone related as she suffers with crippling panic attacks around when her periods are due.
She was put on Metformin and oestrogen patches after being diagnosed insulin resistant, previous to this she had thrush two weeks of a month (again she believes it is hormone related) the Metformin and patches seemed to clear that up BUT she has now been left with reoccurring cystitis and kidney infections (on antibiotics all the time). She was hospitalised for a kidney infection and taken off Metformin as docs believe it was wrecking her kidneys, so all the weight she lost has now been put back on because of her carb cravings and dodgy insulin levels.
Recently (since july) she has been getting pelvic pain, a lot of vaginal discharge, painful sex and abdominal pain. Her periods were already painful and heavy so we are unaware if this is a symptom too. she is awaiting a scan to see if she has endometriosis. She says if she has it she will ask for a hystorectomy because she can not live like this anymore, she says she is on the verge of suicide. I know this seems like an overreaction but she is in constant pain and is taking tramadol, co trydomol and naproxen (which has given her stomach ulcers) just to get through the day.
She has no previous children, and I am worried she will regret having a hystorectomy. But she really is having such a shit time. It's taken since july for her to get a scan because docs have fobbed her off and tested her for chlamydia and other stis because of her age, all clear. One doctor told her she had pelvic inflammatory disease without even examining her!
Any advice would be so appreciated, right now she feels so ignored by doctors and I am so worried about her. After 9 years of being ignored by nhs doctors she got out a loan to go private to be diagnosed with poly cystic ovaries and insulin resistance and is now in debt so added pressure for her. I feel so sad for her.
Wow, she sounds like me (without the PCOS diagnosis) but all the same systems.
I think the question is really, does she want children?
My symptoms have been sorted by depo jabs, but I know they do not work for everyone.
Had I been offered a hysterectomy at 21 I would have jumped at the chance. I would not have regretted it either.
The first thing she needs to do is get 'enteric coated' naproxen so she won't get any more ulcers.
I'm not an expert on endometriosis but from what I understand the uterine tissue is in places it shuldn't be, so a hysterectomy might not cure it, unless the ovaries are also removed.
She is unlikely to be offered a hysterectomy due to her age and parity, she needs to see her GP again and ask for a second opinion. Go with her if she'll have you if she needs an advocate.
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Does she always go to the docs solo? I agree with lyndie that you, or another advocate for her, should accompany her to the gp.
It seems to me that the nhs can be especially crap with chronic, but unresolved conditions. Unless the patient points out its been dragging on for years, I honestly think they won't do it for you... My mum for example has had a headache for years- like 4 years- constantly. At first was given masses of attention/ interest with tests etc but as its chronic, she has to fight to still get the interest level from her gp...
Re your poor dd, I wonder whether she's not ever been considered by the medical profession as a whole as a review ie, having such hugely debilitating symptoms from a young age to the still young age she is now, must be a huge worry, burden, as well as all the pain, and be a trigger, if not the base reason for feeling so mentally affected too. I also wonder therefore is the mental health is the red herring- not to make light of it, but if they focused on resolving the gynae issue, this realistically may improve her mental health situation...?
IME someone medical ie her gp or a new gp for a second opinion- this an option? - could do help her with a full medical audit. Could you help your sister write a succinct summary of the past 10 odd years focussing on the gynae bits, which sound severe and chronic, concluding with how awful this makes her feel mentally, unable to hope, so much so she sees hysterectomy as the only option.
This means you ensure all points are covered and you are sure that the fullness of her situation as well as its history is covered?
Sorry, that was long...
I suffer from suspected endometriosis , never confirmed surgically but classic symptoms that have responded well to treatment so gynae said he is confident it is that.
I can sympathise with your Dsis as I had panic attacks and anxiety around my periods too. You cannot explain to anyone what affect long term chronic pain has on you.
I agree that she would better having someone with her at discussions, I always took my best friend. And a hysterectomy is not a guarantee of a cure. The endometriosis tissue can continue to form in your pelvis and cause problems from what I have read on the subject.
I have both PCOS and endometriosis and your sister's symptoms as described re pelvic pain, pain during sex (this itself is an indicator of endometriosis), abdominal pain are all classic symptoms of endometriosis.
With regards to the ultrasound scan, such a scan will not reveal endo if it is there. She needs a laparoscopy (keyhole surgery) and this is how endo is usually diagnosed; a skilled surgeon can also puncture the cystic follicles on her ovaries at the same time. What your sister needs too most urgently is an appt with a cons gynae who has a specialist interest in endometriosis. Such people are out there and you do not want to keep dealing with a series of bog standard gynaecologists; she needs a proper specialist. Your sister has been mucked around to date and let down as a result. Your sister's story is not entirely dissimilar to some I have read before now; many women are messed around with in ignorance and it can take years for endo to be properly diagnosed.
A hyst would likely not be recommended in her case as endometriosis can occur post hyst; her ovaries would also have to be removed if a hyst was done thus plunging her into menopause.
She must not attend any future appts on her own; she needs moral support and an advocate to also ask questions of the gynae.
www.endo.org.uk is a good website.
She'd have to find a surgoen willing to do a hysterectomy on her first.
I had a friend who was flooding with blood every period, 35, two teenage kids and she had to fight for one. They kept saying she might want more kids.
I seriously doubt she will find a dr willing do a hysterectomy at her age. Following a low GI diet is recommended for insulin resistance.
I had to fight for a hysterectomy at age 32 but it was worth it, it really was the best operation I've ever had. Not an easy op but I recovered well, had immense relief from symptoms (ranging from terrible pain, depression, cramps, flooding etc) and never looked back. It does depend on whether a woman wants children or not; but if you don't, then don't let the doctors convince you that you might...
this may seem to many posters to be a step in the wrong direction, but has she considered having a baby? I have only anecdotal evidence, but often, a lot of gynae problems are resolved by using the uterus for what its meant to be doing. iyswim.
I appreciate that its not that simple, having a baby is complicated by all sorts of other issues, not least of which is someone to father the baby. But if she did have one, and still wanted the hysterectomy, then she could have it slightly more easily. plus, she would be older by a year or so,
I honestly don't think you can decide aged 21 whether you may, at some point in the next 20 years, want a child. I sympathise with your sister but I don't think having her uterus removed is the answer. Attilla has excellent advice.
Your poor sister, how horrific. I was diagnosed with endo after about 8 years of being told by doctors who never examined me that I just had painful periods and to get over myself
Pain continued, I was lucky that I never had painful sex but periods, ovulation, smear tests and bowel movements were all excruciating. I used to take a phone to the toilet with me in case I passed out.
I pretty much collapsed in public and my lovely DH forced me to go back to the doctors. Before this I had pretty much given up on anything improving. I had moved to a totally different area of the country and saw an amazing woman who said she suspected I had endometriosis.
Saw gynae consultant, who said the same. Had a scan to see any cysts, I had some big enough that they monitored them but half the time endometriosis doesn't show up on scans.
In the mean time I was pumped full of drugs, that didn't work so more drugs, prescription painkillers, fake menopause drugs and HRT at 27, that didn't work and finally, I paid to go private just to see the bloody consultant again rather than the people under him and lo and behold a week later I had a laser laparoscopy.
So I would advise your sister to list all the things that she has been through, succinctly, before she goes so she doesn't get flummoxed (I did this) and DH sat and took notes and asked his own questions. She needs to get to the bottom of the problem.
I can totally understand why your sister feels this way, but if it is endo then it doesn't necessarily go with a hysterectomy. Plus her age will massively go against her.
Is she currently under a consultant or just GP?
Sorry no advice, but just wanted to say that at 21 I definitely didn't want children, never had done. At 35 though it was a different story. I hope she gets some good medical help soon.
Your poor sister. I have nothing helpful to add (sorry!) except to say she is a lucky woman to have such a caring and supportive sister.
It's a disgrace that she has been mucked about so much.
If anyone in the family has the money you could pay for a private appointment and laparoscopy with a top (NHS) gynaecologist. If this leads to a diagnosis and recommended treatment, she could then have the treatment on the NHS. It should be possible to get details of the cost of appointments and tests by phone/email.
I know this is an old thread. Just wondered what the outcome was for your sister?
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