Feel let down by hospital

[Womensproblems]

Looking to offload, not sure what I’m asking really.

Had very painful, very heavy and lengthy periods and mid cycle bleeding for years with PMS, ovarian cysts, migraines and other symptoms include deep vaginal pain during sex and bleeding during/after sex. Smears clear.

Was under gynaecology for a number of years and placed on Mirena which did not work.

Had transvaginal scans, ultrasounds and hysteroscopy and discharged from endo clinc as ‘no signs of endo’ and placed on list for hysterectomy.

Had total hysterectomy inc ovaries out. Surgeon told me that they hadn’t expected to find endo and adhesions inc on other organs and it was clear it had been present for years. Surgery was complex.

I complained and was basically told it was resolved now as removed. Apparently a laparoscopy would have been useful to check for endo (and treat it) but wasn’t offered.

I am really distressed that I may have avoided surgical menopause in my early forties if the endo had been removed.

The possibility of taking progesterone to avoid regrowth of endo has not been discussed. Im on 2 pumps of oestrogel/day plus pessaries twice/wk for atrophy which is not sufficient. I need to wait to discuss changes to HRT with a specialist menopause nurse. It’s coming up to a year post surgery and I’m suffering from a whole range of symptoms due to lack of estrogen.

I’m also using Balance Activ moisture pessaries.

Any suggestions?

Sorry you have had such a rotten time and what sounds like poor medical decisions.

I thought drs knew now that endo was only really diagnosed by a a lap? That was the really bad decision at the time, not to do that.

You can increase your use of vaginal estrogen. The new version of Vagifem is only 10mcg whereas a few years ago it was 25mcgs. I have no idea why it was reduced but I have read that many drs say it's ok to use them for 4- 5 days a week not just 2. You don't have a womb to worry about and it's unlikely any will be absorbed in your system.

You probably also need more than 2 pumps of estrogen. You are on the default dose for most women, but not woemn who are young and have no ovaries. There are women (on here and other forums) who are on 4 and even 6 pumps a day.

You really need an urgent referral to a specialist menopause gynaecologist to ask about using progesterone in case there is still endo in your body somewhere.

If the NHS won't come up with an appt can you afford to go privately for one appt? At least that way you can shop around and choose the specialist who can help you.

Thanks for reply @JinglingHellsBells . I was on 4 pumps a day along with testosterone every other days pre surgery. Now I’m on 2 pumps a day with 2 estradiol pessaries per week and no testosterone. It makes no sense as now I have no ovaries my requirements will be higher. No blood tests so no idea what my levels are.

GP told me to discuss with Gynae. Gynaecologist said I need to discuss with Menopause Nurse but am still on the waiting list.

I did purchase a box of estradiol pessaries from an online pharmacy and have used an extra one here and there but am worried about self medicating.

Private does seem to be my only option as I’m desperate now. Would you take the complaint about the lack of laparoscopy further? Im really frustrated as it’s been a difficult recovery and may have been avoided.

You can now buy the pessaries named as Gina from a pharmacy without a prescription.

(They are the same as Vagifem.)

Using it twice a week for a whole year is the same as 1mg of estrogen (less than your daily dose of 2 pumps.) It's a minute amount in the pessary.

With respect to all nurses, I don't think any nurse is qualified to make a call about what you need now, in terms of progesterone. This is fairly complicated stuff and a gynaecologist would ideally need to see the notes/ evidence of your surgery and the extent of it.

I don't know about raising the issue of poor care/ decisions. I expect that would involve you in a protracted case and the outcome of that would not change where you are now. It may be better to spend your time on finding an expert dr who can help you now. Do you live close enough to go to London as many endo experts work in hospitals there?

I am sorry to read yet another thread about the dismissive and interested way womena are treated.
I had a terrible time and became extremely ill from endo (which they felt I didn't have) and fibroids (which they felt I didn't have) which led to huge blood loss and emergency blood transfusions and surgery.

This was all caused by an hormonal imbalance and I am now funding my own progesterone through a private gynae as the GP who missed all of the above feels I don't need it.

I really despair for women and I relate to the feeling that someone should have helped earlier instead of you having surgery and the fall out.

I am really sorry this happened to you.

Unfortunately, the only real suggestion I have is to go private if you can. Even just for a consultation. Often the private gynae can write to your doctor and help push them to proper treatment.

@JinglingHellsBells Thanks for further response. I will have a look at those pessaries.

I’m not near London but will travel if need be as am pretty desperate now. I saw initial consultations are around £250 - I can afford that. It was the price of blood tests etc I wasn’t sure of (am a lone parent, low finances). I imagine they would need to check all my hormone levels and maybe see me a few times to get the dosage correct before they then advise my own GP what to prescribe. It’s those costs I’m not sure I can afford, although I have no idea what figure I’m looking at.

I was really surprised the gynaecologist wouldn’t even discuss it or prescribe.

I wasn’t meaning legal action more to prevent this mess happening to another woman. I just feel utterly fobbed off.

@Blackopal thank you for responding. I’m so sorry for what you’ve been through. I do think it’s sexism in healthcare and that if men had painful penises that interfered with their everyday life in addition to preventing them from having sex then they would not be so easily dismissed.

May I ask how much your consultation and tests
cost please?

You wouldn't be eligible to buy Gina from a pharmacy due to the health screening and what you're already taking. However you can continue to buy vagifem or generic pessaries online and increase from x2 week you're currently using.

Here's a reliable link confirming what Jingling said as to the dose and being able to increase topical estrogen to 4-5 week. You'll have to scroll down to find the relevant bit. Some women use it daily. You could also buy an estrogen cream (Ovestin) online if you have vulval dryness/irritation.
www.chelwest.nhs.uk/professionals/gp-advice-and-troubleshooting-guide-for-hrt-in-primary-care

@over50andfab thank you for the information.

@over50andfaband @Womensproblems Are you sure that the OP would not be eligible for OTC Gina? I appreciate she doesn't fit the 'over 50' guidance etc, but surely a pharmacist can make exceptions such as women who have had surgical menopause which gives the same symptoms as being post menopause?

@Womensproblems Most gynaes these days do not do blood tests for optimal estrogen levels, but work on symptom-relief. (I've never had a blood test from mine in 15 years except right at the start and that wasn't HRT related.)

You are looking at around £250-£300 pounds for an initial consulation. Estrogen level tests are quite cheap I think (maybe £60??) but the issue is whetehr you need progesterone, so that's an 'academic' question, not one that is going to be answered by blood tests.

I am going to PM you with more information.

Thanks so much @JinglingHellsBells

The OP is already taking estradiol pessaries so wouldn't be eligible Jingling unless switching from another form of topical estrogen. Gina is based on using x2 week after the loading dose, not to supplement what's already being taken. There are several questions the pharmacist has to ask before selling Gina including being over 50 and not had a period for a year thing. There's also history of endo.

They can't make exceptions, they have to follow the guidelines and the result of any consultation would be to refer back to her GP. currently Gina can't be offered to women in early menopause - or women of menopausal age between 45-50.

@over50andfab Thanks for clarifying.

Dr didn’t prescribe the Vagifem loading dose of every day for a fortnight before reducing to twice a week. I was so sore I did it anyway as per the instruction leaflet (which helped) but obviously I ran out quicker. Dr wouldn’t prescribe any extra until the date I should have ran out, leaving me back to square one.