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.

SwearyG
I was a bit older than you - early 40s at diagnosis, so maybe that made a difference, but I don't remember the question of having children even coming up in the discussion - maybe 38 is too young to know your own mind and 43 is past it? Bizarrely, at about the same time, a friend who wanted a hysterectomy was being refused - she was using the same NHS hospital and GP surgery and was about the same age as me. I'm not sure exactly what her symptoms and diagnosis were, though.

I’m not sure it was because I’m a woman, more likely down to surgeon’s god complex.

I have cancer, I told the first surgeon I saw before referral to oncology that I didn’t want a prognosis as I wasn’t ready to hear it. Pretty much the first thing he said at my second appt was a % survival prognosis (very poor) before I had a chance to stop him, the fucker. I’ve since been told ‘what would he know he’s not an oncologist’ by a specialist cancer nurse, whom I’m preferring to listen to.

I see a different surgeon this afternoon, the one who is actually going to operate on me (I think? I’m the last person they tell anything to) so fingers crossed this one has a better and more understanding bedside manner, if I’m really lucky it’ll be a woman 😂

This isn't for a chronic condition, but I definitely think pregnancy support is a huge issue.

My experience with the NHS having Hyperemesis was dreadful. I think anything to do with pregnancy women are expected to put up with.

I was vomiting around 10 times a day (some days more), lost huge amounts of weight and some days couldn't keep water down. My midwives didn't seem awfully concerned, nor concerned about the effects on my mental health. I didn't go to the GP for a long time as my midwives didn't seem worried at all. When I finally went to the GP (I struggled to walk there as I was so weak) he suggested ginger biscuits, and only prescribed me medication when I said I wouldn't leave without a prescription. I feared at several points I might die as I was only able to eat 2 or 3 cubes of pineapple a day. Never once was there any acknowledgement that 9 months of constant vomiting would have any mental health impact or impact my general health.

Sarahjconnor

On what grounds are they refusing you??

tsonlyme

Wishing you all the best, fingers crossed you get a women and that you fully recover in good time. Sending virtual hugs your way

Thanks Pennydrew

If I walk into that room today to see a woman I will be absolutely delighted, which in itself says an awful lot, don’t you think?

pollyname

That is so awful to go through. I was vomiting for about half my pregnancy and it is really difficult. I was in NZ then and we get assigned a midwife who we see regularly throughout, along with an obstetrician, then every day following the pregnancy for 2 weeks, before we are handed over to our local Plunket Nurse. I always felt like someone was there and checking me regularly both physically and mentally. I initially had a racist midwife, who I complained about and then got someone who really understood my culture and was very observant post labour. She noticed I was struggling when my husband and I didn’t. She actually told him to take time off work to look after me and the baby better! Loved her.

I would like to know, a friend here said that she never saw the same midwife and for delivery you get whoever is around. Is that correct? Do pregnant women in the UK not have a midwife appointed to them for their pregnancy and birth? I find that really harsh. It’s such an intimate experience you ought to be able to form a relationship and feel like they know you. I actually cried after my midwife left for the final time, I was hormonal of course but I genuinely felt like we’d be best friends afterwards 😂

tsonlyme

It does. I find it sad that’s where we’re at.

My absolute favourite doctor was a man. I saw him privately when very ill and needed all kinds of infusions because of the hormone crap- I couldn’t absorb nutrients properly. I hate even a blood test but he was so nice and gentle, incredibly respectful and got to know me. I had all the infusions without any problem or anxious feelings. We had lots of email chats about how women are treated in medicine!

• oops, I meant every day following labour! They check our bits and sit, have a cuppa and a chat.

I was told I had arthritis in my back. All in the space of 5 mins.
Went private.
Turns out I had 2 herniated discs and a 3rd one on the way out when my husband's health insurance from h0
Male doctor.

I've experienced worse from the NHS, but the instance that shocked me the most was a male doctor telling me it was normal for women to experience debilitating pain during or after sex.

MustBeDreaming

Oh my god 😮 I’m shocked. Truly. That is outrageous.

lolaflores

I’m so glad you could go private, but you shouldn’t of had to.

My mother suffered for years with pain and bowel issues, culminating in her being told she had a large mass in her bowel that was likely malignant. She had half her bowel removed, they said great, its not malignant but no idea what it was. They couldn't understand why she was upset and pushing for more tests/info. They ignored her every appointment when she'd said 'It's definitely every month the pain worsens then goes again, are you sure it's not connected to the endemetriosis I was diagnosed with at 16?'. She just got shrugs and 'No, that's not very likely, it's just a coincidence.' For a decade! Guess what it turned out to be?

I developed sacroiliac issues, pain and awful sciatica when pregnant 13+ years ago. It's better than it was now, but didn't disappear after the birth as they'd said it would. No scans or xrays done since, just string painkillers, useless physio, shrugs and 'This happens after pregnancy/birth sometimes'. My father developed bad sciatica in January. By April he'd had every scan under the sun, diagnosed with a spinal and sacroiliac issue and was having surgery to fix it! I pushed and pushed for a scan - I have exactly the same problem. Still waiting to see if they'll even agree to fix me though. My kids have missed out on me being able to play/run/walk with them for years because women's pain isn't taken seriously!

In your few opening sentences I knew it would be undiagnosed thyroid issue.

And yep, fobbed off with anti depressants.

I've started threads and commented on threads in the past regarding the treatment of women with thyroid issues being a sexist issue.

I do just need to do a shout out for the British thyroid foundation.

Care for women with thyroid issues in pregnancy (mainly under active) is appalling. I wish I could write more.

I was involved with them as a patient on writing their most recent thyroid in pregnancy guidelines.

It's the charitable wing of the British thyroid association (of endos ). So if people write to the foundation with issues they do try to get this across through NICE etc. More people seem to be going to TUK but they don't have the same 'welly' so to speak.

Neurotrash

Only problem with that org is that they don’t support the use of NDT. Women should be given all the possible treatments, and be allowed to try it if synthetics don’t work.

Hi in South London. Several surgeries in this area regarded as good. One factor helping in my surgery is a cohort of older women in 40s and 50s who have seen it all in life and are thoughtful and thorough.

However saw a male doctor there recently regarding followup from a hospital visit and he was insistent on writing to the specialist about an issue which I had not thought was that big a deal. I was very touched by his concern about me and to get it right.

Penny, thank you so much. I’ve just emailed them. I have to take some control back. I’ve given the NHS years of trust and lost the chance to have another child because the thyroid couldn’t be stabilised. I have been offered ADs time and time again when I have gone to the doctors about my thyroid and other health problems. I just need to not be fighting a battle every time I speak to a doctor.

Before my hypothyroidism was diagnosed, I was accused by at least one doctor, outright, of making up my problems for attention and because I ‘couldn’t cope’ with my university course. Once medicated (successfully in those days; sadly post-childbirth it has all been incontrollable) I went back to that tough uni course and got the highest degree possible. I just wish I’d studied medicine instead so I could have been a not horrible doctor!

Yep. Having to go private again because of respiratory problems. Umpteen cancelled appointme y. Back to back doses of steroids.
Actually in hospital now on a nebulizer having an attack.
This going on 2 years. Took ages for a referral. No real treatment started . Despair

True as it's difficult to regulate properly. I personally wouldn't take it. They are supporting a campaign around t3 though. Some of their office volunteers were on t3.

The ideal drug would be one that includes t3 or a long lasting t3 (if humanly possible). They reported on one that was being developed but when I did some searching it appears to have been abandoned.

However - clearly the fact that medicine is not meeting the needs of all its thyroid patients who are mostly women is an issue.

I'll also add that t4 has been fine for me as long as I've been incredibly forceful regarding tests and results and checking for other potential issues.

1. Took me 20 years of appalling, increasingly heavy and very painful periods (it eventually got to 11 days out of every 22) and finally seeing a female GP for it to be taken seriously - every male GP I saw brushed me off. Referral by female GP got me seen by a specialist and successfully treated.

1. Young relative of mine had not started menstruating at age almost 17 - had been taken to see male GP several times, got brushed off. She's an athlete and began suffering stress fractures of her feet, parents took her to a private specialist - diagnosed with very low bone density caused by lack of menstruation. Has not been able to compete for almost 2 years now...

My experience of my GP surgery is that they are very good at making referrals to specialists for any condition. My experience is very similar to DH - I don't think I've been treated any differently in this respect.

The main difference is in their manner towards us. I discussed with DH the recent Radio 4 interview with Dr Polly Carmichael of the Tavistock where she kept laughing (about serious issues). I said to him that perhaps it was like the way doctors sometimes laugh at your concerns about a health issue - presumably as a way of saying it's nothing to worry about (although maybe they just find everything I say hilarious). It turns out he'd never experienced this, yet I've had this at least 3 times (from different doctors). He was astonished that doctors would actually do this.

'I don't want to be laughed at' is my main reason for avoiding seeing the doctor (when sometimes I probably should).

I had really great post-natal care but am in a minority of one amongst my immediate friends and family.

I am currently struggling horribly with pelvic nerve pain and sciatica, plus other symptoms which are all a bit weird and wonderful. It is so hit and miss when you see a doctor. I had one consultant tell me that my constant, debilitating pain was just something to put up with after pregnancy and was probably “just hormones”. He did not like it one bit when I started questioning, “which hormones? Why? What tests have you done so you can confirm that diagnosis? Would you, a spinal surgeon, even be qualified to give that as a formal diagnosis?” He binned me off back to the GP after that but I was so fucking angry that he would think it was ok to say that.

I’ve had an incredibly arrogant pain consultant tell me that I was expecting too much when I said I just wanted my normal life back. Apparently I should just be accepting that at 32 I will be in pain forever, without a proper diagnosis (fairly vital for benefits etc) and slowly get worse. I can’t work and I can’t live independently and I can’t look after my toddler. But yeah, I should just put up with it. Fortunately my latest consultant is a very nice man.