Women’s Health: please share stories of interactions with NHS Dr’s

[Pennydrew142]

I strongly believe the appalling way women’s health concerns are dealt with are down to ingrained sexism within the medical profession. I wanted to start a thread which shared women’s stories of trying to seek help and the way we are spoken to and treated. I’ll start.

I was an extremely fit and healthy woman in my 30’s. I’d had some issues since having children. After dealing with declining health for a year, extreme fatigue, sudden & dramatic weight gain despite a lot of exercise, pain in my muscles and bones, extreme coldness, breathlessness, painful ovulation with a lump on my right hip... and much more, I went to my doctors. He barely listened before declaring I had ‘chronic fatigue’. I told him this seemed to happen after I went on a particular contraceptive pill. He ordered a CBC but told me to ‘reduce my expectations of life’ and accept I was aging. At 39. I spent all my savings going private ( at this point I was bedridden ) and as it turned out, I had an endocrine collapse due to undiagnosed thyroid problems, likely endometriosis ( still haven’t been referred by NHS many years later ) and my endocrinologist believed it was caused by the pill I was on ( Yasmine ) and had come off ( he’d seen it a lot ). I barely made any hormones at all- he was surprised I could do anything, shower myself etc I had to do a lot of work but I did get better- now peri menopausal which complicates things! Definitely not going to my doctors about that!

Oh I forgot. They tried to put me on anti depressants. I got a copy of my records ( at a cost of £20 ) and they recorded nothing about my mood or mental health. I have since learnt that a lot of poorly managed thyroid conditions end up being treated with anti depressants.

Please share your stories. Chronic women’s conditions are complicated and don’t get a lot of research or funding. We need to talk about this and what we can do. I’m sick of suffering while certain other groups get a lot of support.

I found that contraception and anti depressants are pushed As a "cure" for symptoms without investigating the cause. I also feel that doctors and society are far too eager to pump women full of hormones and ignore the side effects.

PerryPerryThePlatypus

Totally agree re contraception & anti depressants. I note that last year I think it was, possibly earlier this year, a report advised NHS doctors to ‘listen to women’ with regards to endometriosis taking so long to diagnose ( 11 years ). Really did not think any doctor would need to be told to listen to their patients 😐

Have to say I have had great care at my GPs . They have been very careful about a number of medical concerns that I have had. They have sent me for tests and further professional help above what I would have expected.

Mumfun

That I great news. If you don’t mind disclosing, what general area of the UK is that? I’m in London. I didn’t have great care when I had a termination either unfortunately.

To be honest, I experience the same type of bias and judgement for conditions which affect both men and women, purely because I happen to be a woman. I’m a health professional myself so I try to be respectful of others input and clinical experience; equally so I’m not stupid and I know when something is not right!

Suffered a bout of post viral fatigue after pneumonia over Christmas 16, expected this to last around 6 months to some extent ... but it continued on. Began experiencing horrendous wide spread pain which seemed to stem from my lower back, extreme fatigue, irritability, etc. Was told likely type 2 diabetes as I’m fat... bloods came back all within normal range aside from Vitamin D and Vitamin B12, both deranged and extremely low. Treated until within “range”, likely cause: being fat, eating rubbish and not getting enough sunlight judgemental bastard didn’t even ask me about any of those things (incidentally up until recently I walked about 10 miles a day out in the sunlight and was in the gym with a personal trainer 3 times a week, I also eat a diet rich in fresh foods because I get migraines from most processed food ) Then diagnosed with Fibromyalgia because apparently there was nothing clinically wrong with my musculoskeletal system despite me having had no investigations.

Jan 18 began experiencing extreme hip pain, again, nothing wrong with me, take antiflammatories, see physio (already seeing works physio) - at this point I told the GP that I felt I had trochanteric bursitis and sciatica and I would like a referral to Orthopaedics as the two were making each other worse - GP refused. Carried on in pain and doddering around, again told Fibromyalgia, nothing they can do. Just take some antidepressants and it’ll all be okay.

Went back multiple times, same outcome.

September 18 - went to GP and refused to leave unless they referred me to Orthopaedic team as my mobility had tanked to the point of needing a walking stick at the age of 29! Also experiencing excruciating lower back pain, sciatica and altered sensation to feet. Told likely walking funny because of hip pain and probable type 2 diabetes as still fat - funnily enough bloods came back lower end of normal as usual.

13th October 2018 - ended up in A&E due to possible cauda equina (possible lower spinal cord compression) as extreme symptoms. Sent away with urgent (2 week) referral for MRI, emergency apparently not indicated.

26th October - finally seen by Ortho. Diagnosed with... Trochaneteric Bursitis as I suspected back in Jan. Told it had been left too long for conservative treatment; I would likely need surgery but could try steroids in the meantime whilst waiting for MRI.

11th November - MRI cancelled due to double booking. Told not urgent

2nd December - MRI scan at last. Huuuuuge herniated and sequestrated L5:S1 disc. Probably been there over a year... Urgent 2 week referral to Neurosurgery as will require surgery to resolve. Told a big sneeze or a fall into my backside etc could cause complete compression so “be as careful as possible”.

No appointment in sight - well it is Christmas, you might have to wait a month to be seen... oh you’ll probably be okay at home because you know the signs of Cauda Equina and so it’s unlikely you’d leave it to the point you’re paralysed. What kind of get out clause is that?!?!?

Honestly I fucking give up now. I’m 30 years old, I have to use a walking stick all the time, and I’m waiting for the next big sneeze that paralyses me.

Complete juxtaposition. Male colleague of mine, seen at GP and respected for his opinion, immediately sent for MRI, seen by Neurosurgeons and had surgery in the space of about 6 weeks. His disc was barely even herniated and he was experiencing intermittent symptoms that were “annoying him”. Bastard

Sorry that’s the most enormous post I’ve ever written

My GP is brilliant and female obviously I'm in a small northeast village.

My husband was prescribed stronger pain killers after he had a toenail removed then I was first given after my third Caesarian.

Baby was in HDU so nothing to do with not being too doped up to look after him.

Orangesox

I am so very sorry to read your experience, you have been treated very disrespectfully. I hope you have good support around you. It’s just not right that you’re now going through something so serious, that could easily have been avoided if they had just done the most basic thing: listened to you.

You’re right too, it’s not just women’s health conditions that women experience poor care for. I went in for some anti anxiety meds for an upcoming holiday. I had got stuck on the tube for a very long time and since developed really bad anxiety and horrendous panic attacks when travelling. I was seeing a therapist for CBT ( at my own expense and with success ) but needed just 2 doses for a longer journey I hadn’t yet addressed through CBT. He was extremely rude to me and insisted repeatedly I should go on anti depressants ( again ). I said I don’t need anything daily, I just needed it for one journey and I would continue to have therapy to deal with it long term. He actually raised his voice. Wtf? Stop pushing Prozac on women!

I bled for 3 months straight. Quite heavily at some points. On the heavy days I couldn't leave the house. To my GP's credit he put in a referral to the gynaecologist. In my area, all GP referrals are sent via a private company to review them and decide if they are necessary. This company decided that a 3 month long period wasn't some that warranted investigation and that I should just be left continuing to bleed for however long it lasted.
Luckily my GP appealed and got me the referral. I was diagnosed with PCOS.

I started having really heavy periods when I was recovering from anorexia - horribly heavy, painful and long in spite of still being underweight (normally women wouldn't menstruate at that BMI - I'm so lucky) and I was eventually diagnosed with fibroids and referred to gynae. Whilst waiting for the referral I started bleeding very heavily 2 days after my last period ended - soaking a super tampon an hour - so took myself off to A&E as 111 told me to, only to be told it was a period (it really wasn't) and prescribed tranexamic acid (didn't make a blind bit of difference).

I managed to see the gynaecologists on a cancellation and was put on norethisterone to stop the bleeding, which made me put on so much weight I ended up seeing the mental health crisis team as I was suicidal. The gynae team wouldn't treat me as a person with multiple health issues, they just treated me as a fibroid. The weight gain started me on a massive restriction spiral again because I couldn't cope with the change in my body. It was not a fun time.

I saw the gynae again and was told that they could give me mirena (I can't manage hormone treatments due to my MH) or gnrh antagonists (I think that's what they're called) which have horrible side effects, not least causing bone density issues - something you don't want to exacerbate in someone with a restrictive eating disorder. They would not consider surgical intervention, basically telling me that my choice was the drugs that made me fat, ones that made me crazy, or ones that would damage my bones. And if I wouldn't take any of these - with my significant reasons not to - they wouldn't help me.

I paid for a hysterectomy instead.

SwearyG

Oh Jesus Christ, that is horrendous. I wish I could say this was the first time I’ve heard that type of story. I find one of the most frustrating things, is the lack of safe options for us. You’ve got no decent option but to go private. Most women can’t afford to do that- the same with women who have thyroid problems, I was very fortunate I could. I had a support group for a while and I felt absolutely terrible that my advice to resolve thyroid and hormonal issues, meant paying a fair bit to go private. It broke my heart that most I tried to help couldn’t afford it. An online friend took their life because of it.

I’m actually contemplating asking for a hysterectomy as my period is just horrendous and peri menopause is fucking up my thyroid and adrenals again. But I don’t think I can afford it at the moment & doubt the NHS will offer it.

NoseringGirl

Thank you for sharing. I had no idea there were private companies looking at referrals!

Pandamodium

I actually had a female at my clinic who gave me my CBC results, equally rude and when I asked for more hormone tests said: no, we don’t do that. Yes they do!

It was frustrating as hell Penny but fortunately we were in a position to spend the money (we’re not now, redundancy decimated our savings) and get me the treatment that was best for me. I am angry that I had to go down that route, but it was the best thing for me as a patient to have had the surgery. I’ve been significantly better as a result, I think mostly down to taking charge. I probably should have complained but my mental state was so fragile I couldn’t contemplate it at the time.

I did google the gynae I saw and he has written papers on hysterectomies for young women with gender dysphoria. Which made me as he wouldn’t treat me properly.

If you do decide/can go private look into BUPA on demand - they insure you for the procedure so if there are complications your bill doesn’t go up. We found the service excellent and had no issues at all.

Penny it was a female consultant in hospital who wrote me up for paracetamol.

I think I've just got a great GP irregardless of gender.

I did find the two females at our surgery more knowledgeable and sympathetic when I had some gynae issues with DS but that could well be coincidence/luck.

I'm sorry about what you went through, I've spent half my life on and off various AD's, AP's and mood stabilisers starting them and weaning off them can be horrendous and putting someone on them that doesn't need them is extremely irresponsible.

I am currently in the throws of extreme fatigue, weight gain, muscle aches etc. I'm pretty sure it is my thyroid - but I am actually scared to go see my doctor. I just know what will happen...

I'll be told to lose weight (bit tricky when your metabolism is shot to pieces and you're too tired to exercise)
They will suggest ADs for the low mood (ive never taken any medication ever - except the pill)
Ill be sent for blood tests which will come back normal - because their ranges are designed to push people onto medications rather than treatment.
I will be told it is peri-menopause and nothing they can do.

I might underestimate my doctor's - but in the past I have been told that heavy periods were just something I had to put up with and been told to take medication for acid reflux without being informed of the long term complications - thank goodness I did my own research and changed my diet.

SwearyG

Thank you for that. I’m a very nervous patient and have never had surgery. But I can’t cope with much more of this! I took was too fragile to fight for the care I deserved, so went private. It’s totally unfair but I needed to get it done and my husband insisted I didn’t wait any longer.

OP, would you be able to let me know who you eventually saw for help? I’m too upset to write about the way I’ve been treated (for over 20 years of illness) at the moment by doctors, but it mirrors your own and is without a doubt because I was a girl and then a woman. I am near London and trying to find someone private for thyroid issues as NHS have said I have to accept cycling up and down and not reacting properly to medications. I have stopped work as can no longer cope and have several other serious health problems that may be related. Thanks if you could give me a pointer in a helpful direction. Luckily I am able to go private a bit but so far not had much luck there either.

SwearyG

Given my experience, I'm surprised at what happened to you regarding your request for a hysterectomy. When I was diagnosed with fibroids I was offered the same things as you - mirena coil or various drug treatments (I can't remember what, but after googling I decided I didn't want them). When I rejected those options they offered me a hysterectomy. This wasn't something I wanted except as a last resort, and I eventually found a treatment I did want which was embolisation (UFE). The gynaecologists were reluctant to refer me for this and kept pushing for a hysterectomy, but I eventually got the treatment I wanted.

Following the UFE procedure, I had a few post-procedure issues - my abdomen was even more swollen than before, and I was concerned that it might be infection or some other complication rather than just inflammation. Once again I was offered a hysterectomy rather than just reassurance that it was all OK - I think they just didn't know what was normal as they hadn't been offering that treatment for very long.

So I'm always surprised when people say that they are not offered a hysterectomy, because they tried to push one on me when I was quite clear I didn't want it. I'm not sure of the exact time scales, though, as it was about 5 years from diagnosis to treatment, and they may not have offered the hysterectomy in the first couple of years.

It’s across the board - women and men healthcare providers - and ourselves actually too. Sexism is ingrained in our psyche.

I personally experienced the patronising attitude and attitude of many HCP during ante/postnatal period as saturated throughout the system. Lack of respect for women endemic. Right from having to wait two hours for a scan without access to healthy food ( result - hunger leading to me eating chocolate and fizzy drinks and being suspected of diabetes and treated like a cow), through to being ‘told off ‘ during a vaginal examination because I hadn’t had a smear test on time (miscarriage before pregnancy and then pregnancy left a long period when I wasn’t concerned with smear tests) - continuing through to appalling treatment during both and postnatal (unauthorised rupture of membranes, lack of adequate pain relief after c section, no cot for baby for four hours). Just total lack of respect and consideration for dignity and a brain in a woman. Not to mention the poor woman in the waiting room who did not speak English and had called an ambulance because she was in very early labour, in pain, on her own and didn’t want to get a bus- she was ridiculed and sent home - to what?

I’ve brought it all back now but it’s women as much as men and it’s an attitude so deeply ingrained. We fly. Even expect decent treatment for ourselves - I ha she most horrendous periods for the whole time before getting pregnant and I did nothing about it - just suffered.

rememberatime

Don’t take too much time checking on thyroid disorders, as prolonged hypothyroidism without treatment can lead to heart problems and other issues. If it’s really a thyroid disorder, it’s thought to be genetic and the only effective treatment is taking hormones. It’s better than being sick ( my endo said I would die early and suffer a long time, I did my research and he is right ). I am the kind of person who avoids taking medication of any kind, never take pain relief for endometriosis even. But I wish to god I hadn’t waited so long to take thyroid meds.

The NHS only check ‘ TSH’, thyroid stimulating hormone. It’s not a thyroid hormone, it only tells you what message is being sent from the brain. You need to check: free T3 & free T4, the free is important. Also thyroid antibodies are essential checks.

I can recommend using medichecks.com for reliable home kits, I suggest a full thyroid panel. They have different combos but if you can afford the one that checks ALL possible thyroid hormones plus lots of key vitamins ( affected by thyroid disorders ), I would get that. The have sales on Thursdays so you can get it for £50-70 I believe.
It’s hard and overwhelming to get your head around hormones, but I firmly believe women should do so in order to understand their bodies and what can happen, what to expect etc a good website for info on the thyroid is stopthethyroidmadness.com it’s a lot of reading but my goodness it really saved me from years of illness.

ScipioAfricanus

I am so sorry. It’s so hard. I’ve added links for testing and understanding your thyroid above.

To find a doctor that will order the right tests and is open to prescribing whatever is required, including natural thyroid hormones and not just synthetic, contact thyroiduk.org They sent me a list of doctors. The one I saw has since retired- he gave terrible advice on diet so I ignored that! The only dietary thing that helps, aside from the usual basic healthy advice, is to really make sure you get iodine regularly. I also added a single Daily Brazil nut for selenium. Both are crucial for thyroid hormone production.

Thyroid UK are great so def get in touch. If you need anything further, please feel free to message me. I also recommend not doing too much exercise when you’re really ill, and making sure you eat enough. I lost my appetite and found eating difficult. Still do sometimes. But the fatigue is helped a lot by regular small meals.

Sending you my best. I totally understand what you’re going through.

Sorry, links

www.medichecks.com

thyroiduk.org

stopthethyroidmadness.com

There’s also a global campaign to change the way this condition is managed.

ArkeNOTen

Yes, you’re right. That’s why I want to encourage discussion. We shouldn’t accept this.

In the middle of my thyroid hell, just as it started to settle, I got pregnant. I was told I was in early menopause not that long before. The foetus was small and we were both afraid what it would do to my condition. It obviously wasn’t planned. So I had a termination, with a very heavy heart. The whole experience was awful. I was told on the first day not to eat and turn up at 9. Bearing in mind I already had Adrenal problems. I waited 4 hours for the first appointment, another hour until I could eat. Then the women told me I might be overmedicated for my thyroid because I was shaking for the exam. No! I was almost passing out with hunger and fatigue! The room we all sat in, very crowded and extremely hot with no windows open. I felt like we were being punished with disrespectful treatment on purpose. I honestly did. And of course I had to pass religious nuts on the way in telling me I was a murderer- with signs not with yelling.

We need to find some strength to assert ourselves and say, this is not good enough.

OldCrone I think that’s one of the big frustrations - that it varies according to the HCP. One of their reasons for not allowing the hysterectomy is that I was too young and I would want children later on. Indeed it was returned to again and again. I was 38, so whilst still a perfectly normal age to start a family, plenty old enough to understand what I wanted and what a hysterectomy meant. DH had the snip well before my issues so it was a decision we had made definitively some years earlier. It was suggested that in spite of that we could still choose to conceive (ignoring that a changing body due to pregnancy is beyond my ability to cope re anorexia). It was so dismissive and “you’ll change your mind”.