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[sallysally]

I am new to this site, and am hoping that this is OK to post and also hoping I've put it in the right place.

This year I've had 3 trips to the hospital in January and February of this year due to excessive bleeding, I underwent 1 pelvic scan and 1 hysteroscopy without aesthetic and 1 under general aesthetic.  It was a nightmare at one point I had to ring the out of hours number to ask if I could start taking the blood clotting tables (given to take before 1 of the procedures as I really felt I was going to bleed to death.  Anyway on a routine trip to my GP at the beginning of June 2019 whilst having an annual drug review it was discovered that I had been on the wrong HRT since 2014, the HRT that had been prescribed was for women who had had a hysterectomy, and that it did not contain any progesterone.  This from what I have now been told by the GP can cause womb cancer and a thickening of the lining of the womb (excessive bleeding), she has also said that she will report this (but to whom I don't know). To be completely honest how do I know if this was actually reported?

I am not angry with this GP as she picked it up on the first review with her (as I moved a year a go) but I am furious with the gynae department in the hospital because during my trips there surely they should of checked my medication or is this me being stupid and if they don't why do they ask for a list of your medication. I am also furious with my last GP as I have to go every year for a review and nothing was ever picked up and they continued to prescribe to me since 2014.

From what I can gather I now have to go yearly for pelvic scans to see whether I get womb cancer, and have had to go back to the beginning of using HRT whilst they try to sort the damage out done to my womb (so back to sweats and mood swings etc). I have a 9.8mm thickening and in their words bulging ovaries, and fibroids.

I have had a further telephone call with my GP who has said that in her opinion my problems were caused by the wrong HRT patch prescribed.  I have also spoken to PALS about this who have said they will get gynae to get in touch with me to discuss this issue but I really don't know if that is the right thing to do.   

What should I be doing to stop this happening to someone else as the beginning of this year was hell and I am not looking forward to constantly waiting to see if I get womb cancer.

Obviously this is a very shortened version of what actually took place, but I just don't know what to do, or should I just do nothing?

[KatyB]

Wow SallySally, I don't have answers to any of your questions, but I am appalled....whoever originally prescribed was way out of line with guidance on appropriate prescribing (see treatments tab above, divided into pre/post menopause and combined or separate treatments). Its a basic that if you have a womb and take HRT you need progesterone to protect from womb lining proliferation. I think for your own peace of mind you need a referral to a hormone specialist (not sure if its for HRT or endocrinologist) so that you can find out the implications of the years without progesterone - that may be what PALS are offering but it may just be a "there there" from the hospital gynaecologist and you need to know the implications for you. BUT, as far as I am aware (not medical person) if they have scanned you and found thickening, but not cancerous, then you can now get on with treating the thickening. It does sound like the fibroids growing and bleeding are down to treatment of "unopposed" estrogen. I'm guessing here, but it might be the General Medical Council that the report would be made to, they regulate GP's....I'd focus on the "not cancerous" aspect and accept there may be a lag before the "no sweats" aspect can be addressed though. The other symptoms are horrible, but not life threatening. But what an awful saga for you.

[Dancinggirl]

Hi and welcome to MM sallysally

Sadly, I am not surprised to hear your story.  Many GPs are not well enough informed about the treatment of the menopause and certainly not up to speed on HRT. That the hospital didn't check the type of HRT your were, on when you were getting excessive bleeding, is frankly negligent. You poor thing!!!

The other issue, I'm afraid, is that we women are not educated about menopause - society is still treating this subject as a taboo and something we should simply ‘put up and shut up' about.

This website should be advertised in BIG LETTERS in every GP surgery and every hospital so women can get clued up and also find appropriate information and support.  At least you now have a GP who is a bit more on the ball.

I quite understand you wish to improve things - there are quite a few ladies on this site who are working hard to get the word out there - browse around to find out more.  DG x

[Jari]

Welcome Sally!! So sorry to hear this nightmare you're having.
Hrt is very powerful and can be terrible for a lot of women. I had my own horrible experience with hrt, though only 2 months and came straight off the damn stuff!!!
I would make sure you keep all correspondence related to this matter in a file.
Would you consider coming off it altogether and giving your body a rest?
It's great that you are posting this info on this site as many people read this, so that is a great start. 👍
Your lining will no doubt shed soon and then your body will need some time to recover and rebalance!
Wishing you well and although late, at least you now know what was wrong. X

[sheila99]

I haven't gone down this route myself but there is info on the web about how to complain. It might be worth complaining about both the original gp and the hospital, as you say they should have looked for the cause. You could ask for a copy of the letter they sent to your gp in case it mentions it.

[sallysally]

Thank you for your replies, I have to stay on the HRT as they are using it to rebalance everything and I seriously can't cope without it.  My GP has said they have had numerous meetings at their practice to ensure this does not happen to any of their other patients.  I never thought to ask for copies of letters sent so will definitely ask for that as I know my GP contacted Gynae for advice regarding this, I also know my GP disagreed with their advice and went to the menopause society for their advice, and after discussing this with me we have gone with the menopause society.  Although I want to complain and no doubt will I want to make sure my GP doesn't get into any trouble because she has been fantastic and said to me ' you should be angry with me as I did not pick this up in January and referred you to Gynae'.  My point being that she picked it up eventually and its not her speciality so I will always be grateful.

[Dancinggirl]

Sallysally- thank goodness you have a good GP now. At least now you will get the appropriate HRT you need.
HRT can be great for so many women - it can protect your heart and bones for the long term as well as reducing menopause symptoms.
Do consider having a Mirena fitted as it protects the womb lining very well, reduces and often stops all bleeding and allows you to adjust your oestrogen use, depending on what you need.
Keep us posted. DG x

[pepperminty]

Hi,

Shocking story, I do hope you get some answers. Peronally I would make a coplaint. Google how to complain to NHS etc and go from there. It will take a lot of strength, but may stop it happening to smeone else.

PMx

[Foxylady]

sallysally, that is awful what has happened to you. I'm with the other ladies about complaining as it could change practice for future and save other ladies going through what you have. I'm pleased your GP eventually noticed and that you have built a relationship with her, it must have been hard for her to be honest and open about it but as you say your not holding her responsible and her candid approach has given you trust in her. Wish you all the best with your new regime and be reassured in relation to the scans. x

[CLKD]

PALS can be HUGELY helpful.  I was in contact with them when Mum was in Hospital a few years ago, they had access to her notes ;-). Being independent, they could take time to talk to me, read my report that I sent via e-mail and check the notes against what Mum was telling me [she tends to tell lies].  Therefore it wasn't taking up the time of a Consultant nor was it confrontational.  It was really helpful to me.

You can of course go through your notes with the GP though some Practice Managers charge for this.  Complaining can be tiring as the NHS has the habit of closing Ranks.  Better to build a working relationship with the GP initially. 

The womb lining is thicker than what would be expected so good that you are having scans.  Hopefully the body will sort itself.  H(hormone)R(placement)T(herapy).  Replacing what your body may have required.  You could ask the Consultant what the chance is of your womb being affected, now that you are 'in the system' anything untoward can be dealt with.  Of course you will worry and it would be crass of me to suggest otherwise but NO you are not being stupid.  This is your body and your medical history.

Do you keep a mood/symptom/food diary, some find it useful.  When you see your GP maybe ask for a late afternoon double appt. so that neither of you feels rushed?  Maybe discuss this with the Practice prior to the next appt., they can ask the GP is she is agreeable too.  Make a list of your worries and take along.  I hand my list over and he reads it through so that we can prioritise.

The GP is on a learning curve too.