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Original poster

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

61 replies

Pennydrew142 · 11/12/2018 08:04

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.

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lolaflores · 11/12/2018 12:19

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.

Original poster
Pennydrew142 · 11/12/2018 12:18
  • oops, I meant every day following labour! They check our bits and sit, have a cuppa and a chat.
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Original poster
Pennydrew142 · 11/12/2018 12:17

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!

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Original poster
Pennydrew142 · 11/12/2018 12:15

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 😂

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tsonlyme · 11/12/2018 12:13

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?

Original poster
Pennydrew142 · 11/12/2018 12:07

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

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Original poster
Pennydrew142 · 11/12/2018 12:05

Sarahjconnor

On what grounds are they refusing you??

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pollyname · 11/12/2018 11:50

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.

tsonlyme · 11/12/2018 11:41

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 😂

OldCrone · 11/12/2018 11:41

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.

Sarahjconnor · 11/12/2018 11:33

This reply has been deleted

Message withdrawn at poster's request.

Sarahjconnor · 11/12/2018 11:33

This reply has been deleted

Message withdrawn at poster's request.

SwearyG · 11/12/2018 11:27

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”.

Original poster
Pennydrew142 · 11/12/2018 11:27

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.

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Original poster
Pennydrew142 · 11/12/2018 11:19

Sorry, links

www.medichecks.com

thyroiduk.org

stopthethyroidmadness.com

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

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Original poster
Pennydrew142 · 11/12/2018 11:17

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.

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Original poster
Pennydrew142 · 11/12/2018 11:12

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.

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ArkeNOTen · 11/12/2018 11:11

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.

OldCrone · 11/12/2018 11:10

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.

ScipioAfricanus · 11/12/2018 11:09

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.

Original poster
Pennydrew142 · 11/12/2018 11:02

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.

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rememberatime · 11/12/2018 10:50

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.

Pandamodium · 11/12/2018 10:25

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.

SwearyG · 11/12/2018 10:17

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 Angry 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.

Original poster
Pennydrew142 · 11/12/2018 09:55

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!

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