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[jeom71]

Hello, some info about me:

3 years ago after the birth of my youngest child I developed large tumours on my ovaries.

Last Sept I had one of these tumours removed (it was 17cm in size by then!) and they biopsied another on the other side. I had surgery at Royal London Hospital. I think it awful they took so long to do surgery, but thats another issue.

So I had my right ovary with fallopian tube removed. I still have my left ovary but it has large tumours on it. The biopsy results show the tumours are benign.

I haven't had periods now since my daughter was born (almost four years ago). We werent sure if that was due to the tumours or age. I am now 46. My last FSH score was 35.

I have horrible menopausal symptoms, sex is really really painful (both myself and my husband bleed if we try), my memory is shot (I can't remember words of common household objects even, it's so frustrating!!) I can't sleep properly at night and then I'm tired all morning and my mood swings are epic. I get angry at the touch of a button and really I am the most thoughtful and kind person, ever. I had my first "hot sweat" the very night after my ovary was removed.

I feel absolutely desperate for something to ease these symptoms. I want and need a proper nights sleep, I want to be able to be kind with my children and not intolerant, and I want to remember normal things like I used to be able to and I want to be intimate with my husband.

I've requested HRT, my GP says that because of the remaining tumours they cant give it and sent me to a clinic called BMI Kings Oak in North London. I saw the doctor there who gave me a blood test and ultrasound but when she saw the tumour said she wouldn't treat me either and I should go back to Royal London Hospital. I went back to the Royal London Hospital who said they don't do HRT, that it's done in the community.

All this has taken months and no relief from my symptoms during this time.

Went back to my GP this week and they said they'd contact the hospital to see what they say.

I seem to be getting nowhere fast. I don't feel I'm getting proper care at all.

My main problem at the current moment is my vagina is really really sore and painful. The nurse at GP surgery did a swab last week. No infection, I am just really really dry. I am using an over the counter moisturiser (vagisil) and lubricant (KY) but I'm still in pain.

I can't take it much more

Any advice please?

[Joaniepat]

Hello jeom71, welcome to the forum.

I think you ought to be able to try local oestrogen for the vaginal problems, as it is not absorbed systemically. The usual products are Vagifem or Ovestin, which are available on prescription. Have a look at them under Treatments on the green banner at the top. As to vaginal moisturisers, Sylk or one of the Yes products seem to be the most popular on here. Sylk will send a free sample if you look on their website.

I am sorry I cannot comment on the other issues, but am sure more knowledgeable ladies will be along soon.

All the best,
JP x

[Annie0710]

Vagifem or ovestin are very very tiny amounts of oestrogen and you desperately need this asap

It sounds like the remaining ovary isn't working if you developed flushes straight after the first one being removed

If you had your remaining ovary removed would they consider hrt then ? That might be an option.  Stick around, there's every chance someone within a few days could give you much better information xx

[jeom71]

Hello jeom71, welcome to the forum.

I think you ought to be able to try local oestrogen for the vaginal problems, as it is not absorbed systemically. The usual products are Vagifem or Ovestin, which are available on prescription. Have a look at them under Treatments on the green banner at the top. As to vaginal moisturisers, Sylk or one of the Yes products seem to be the most popular on here. Sylk will send a free sample if you look on their website.

I am sorry I cannot comment on the other issues, but am sure more knowledgeable ladies will be along soon.

All the best,
JP x

Thank you I will give the GP a call in the morning and ask for those by name.

He did give me a prescription for oestrogel but the pharmacist said they checked with the manufacturer and they cant get hold of it. :/

[jeom71]

Vagifem or ovestin are very very tiny amounts of oestrogen and you desperately need this asap

It sounds like the remaining ovary isn't working if you developed flushes straight after the first one being removed

If you had your remaining ovary removed would they consider hrt then ? That might be an option.  Stick around, there's every chance someone within a few days could give you much better information xx

I had thought that the tumours were preventing either ovary from working and thats why my periods stopped. The tumours also made me bloat up and throw up constantly so I don't miss the right ovary and it's tumour, but the menopausal symptoms are so extreme I feel quite desperate for some relief.

They said better to keep the left ovary as even though it doesn't seem to be working it could give some form of protection later on, maybe. It's all a bit of guesswork in a way I think. 

[Annie0710]

I just see your post about oestrogel not in stock.  I use that and haven't had a supply problem BUT often they give oestrodose instead, many ladies are fine on it but I do notice the difference, it seems weaker
Maybe you could ask the pharmacy to ring round or you take your script to another chemist

X

[jeom71]

I just see your post about oestrogel not in stock.  I use that and haven't had a supply problem BUT often they give oestrodose instead, many ladies are fine on it but I do notice the difference, it seems weaker
Maybe you could ask the pharmacy to ring round or you take your script to another chemist

X

Thank you xx

[jeom71]

Spoke to my GP today and asked about vagifem or ovestin and he said they arent going to give me anything due to the ovarian tumours until they hear from the hospital. I'm pretty dismal about it because if the pharmacist was able to get the oestrogel I'd have something that could help me by now and I don't have any way of helping with all this even temporarily

When the nurse did the vaginal swab, she said its possible to get oestrogen cream over the counter now, I can't find anything at all, does anyone know if she was just wrong?

[Dancinggirl]

Do you still have your womb/uterus?  If so, then you need some progesterone to take for 10-14 days each month with the Oestrogel/Oestrodose as this will protect you uterine lining.  Your GP has prescribed HRT despite telling you being told you can't have HRT??? Strange that they prescribed Oestrogel but won't prescribe Vagifem!!!! The Vagifem would be the safer of the two options at this stage!!!! The nurse is wrong you can't get Oestrogen cream over the counter!!!!! Vagifem or oestrogen creams are prescription only but should be a standard treatment for any women who has entered menopause to help prevent urogenital atrophy for now and into the future - so basically all women from menopause onwards should be using local oestrogen for the rest of our lives!!!!!

In the mean time, get some vaginal moisturiser so help with the dryness - I love SYLK and you could even try some coconut oil??? The you feel you want to try sex again - I find Durex, Perfect Glide, is the best lubricant - KY simply isn't good enough.
I would insist on being transferred to a specialist gynaecologist or menopause clinic - you are too young to be oestrogen deficient - but if they won't refer you, could you afford to have a private consultation? It may be worth seeing a specialist - I wouldn't normally tell someone to do this but in your case you need proper advice as you GP is clearly clueless. He's given your oestrogen HRT with no progesterone and refused you local oestrogen  - this simply doesn't make sense. DG x

[jeom71]

Do you still have your womb/uterus?  If so, then you need some progesterone to take for 10-14 days each month with the Oestrogel/Oestrodose as this will protect you uterine lining.  Your GP has prescribed HRT despite telling you being told you can't have HRT??? Strange that they prescribed Oestrogel but won't prescribe Vagifem!!!! The Vagifem would be the safer of the two options at this stage!!!! The nurse is wrong you can't get Oestrogen cream over the counter!!!!! Vagifem or oestrogen creams are prescription only but should be a standard treatment for any women who has entered menopause to help prevent urogenital atrophy for now and into the future - so basically all women from menopause onwards should be using local oestrogen for the rest of our lives!!!!!

In the mean time, get some vaginal moisturiser so help with the dryness - I love SYLK and you could even try some coconut oil??? The you feel you want to try sex again - I find Durex, Perfect Glide, is the best lubricant - KY simply isn't good enough.
I would insist on being transferred to a specialist gynaecologist or menopause clinic - you are too young to be oestrogen deficient - but if they won't refer you, could you afford to have a private consultation? It may be worth seeing a specialist - I wouldn't normally tell someone to do this but in your case you need proper advice as you GP is clearly clueless. He's given your oestrogen HRT with no progesterone and refused you local oestrogen  - this simply doesn't make sense. DG x

Thank you. I feel like my care has been pretty poor especially now I'm just not being given anything. I am back in hospital (Royal London) on Monday but just for imaging, so they can measure the remaining tumours, I see the specialist (gynae consultant) middle of March... but that is ages to wait, and last time I saw them, they said the GP should do the HRT. The consultant will just be expecting to discuss the tumour and probably advising to "watch and wait", or in other words, do nothing, but I will bring up the HRT again. I wonder what I can say to make them understand that it really feels awful.

I did have a look in Boots today, no "sylk" products. Holland and Barrett had a "yes" product but I dont think it was what I needed, they have two letters after the "yes" and I wasn't sure which one I should go for. I did see Durex in Boots I will look for that particular type.

I still have my uterus, plus the left ovary and fallopian tube. I do want to have sex with hubby! Still desire him. Just the pain of it is awful

The doctor I saw at BMI Royal Oak was a private doctor but it was done under some NHS scheme, and she wouldn't help either Soon as she saw the tumours on the scan she said I should be referred back to the hospital.

[Dancinggirl]

I'd  get the vaginal moisturisers online and the Durex Perfect Glide is rarely in chemists so best bought online as well.  You do have to tell your GP that you need progesterone - either Provera or Utrogestan - to use with the oestrogen gel, as the Kat things you need is to get  problematic bleeding on top of the tumours on your ovaries. Look at ‘Progesterone' section under the TREATMENTS on this site and print it off to show the GP if necessary. It is appalling that GPs are not up to speed in treating menopause. I would still insist on some Vagifem as well. DG x

[Joaniepat]

Jeom71, have a look on line at Sylk and Yes, or maybe ask the pharmacist. As these products are also available on prescription the pharmacist would know about them. Otherwise I would just buy on line. You can get coconut oil from any health food store. Like dancinggirl, I am a Sylk fan.

The nurse is wrong, you can't get oestrogen cream otc. What a clueless lot!

I do think you have been treated appallingly and I hope you can soon find a way through this.
JP x

[jeom71]

I'd  get the vaginal moisturisers online and the Durex Perfect Glide is rarely in chemists so best bought online as well.  You do have to tell your GP that you need progesterone - either Provera or Utrogestan - to use with the oestrogen gel, as the Kat things you need is to get  problematic bleeding on top of the tumours on your ovaries. Look at ‘Progesterone' section under the TREATMENTS on this site and print it off to show the GP if necessary. It is appalling that GPs are not up to speed in treating menopause. I would still insist on some Vagifem as well. DG x

I will have to do a little online shopping

Well the GP isn't going to give me anything at present so I guess I have to wait till they hear from the hospital that they can give HRT or not. If I'm allowed it then I'll make sure it's both progesterone and oestrogen. I'd like to have a proper monthly cycle back again for sure and I will have to remember to ask for the vagifem then too. Once they can give HRT then they should be able to give that too. If they havent heard anything before my appointment with the consultant then I will ask the consultant again also. Such a rigmarole!

Thank you for your help x

[jeom71]

Jeom71, have a look on line at Sylk and Yes, or maybe ask the pharmacist. As these products are also available on prescription the pharmacist would know about them. Otherwise I would just buy on line. You can get coconut oil from any health food store. Like dancinggirl, I am a Sylk fan.

The nurse is wrong, you can't get oestrogen cream otc. What a clueless lot!

I do think you have been treated appallingly and I hope you can soon find a way through this.
JP x

Thank you. That blooming nurse had me checking everywhere! Silly me!!!

[jeom71]

When I went into the pharmacist yesterday and was talking to them, a lady said had some left over oestrogel and progesterone, she dropped them to me last night and I'm very tempted to try them even without the doctor's support. I read through the advice thingy though and was a little put off by it. What do you knowledgable ladies think? On one hand it might really improve things for me while I'm having to wait for the hospital and everything... on the other hand it's a bit worrying to take it without the doctors knowing.