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[Twinmummi123]

Hello,

I posted a couple of weeks ago about bleeding on continuous HRT…I spoke to the GP before new year and she referred me for a scan.
The scan shows multiple fibroids, endometriosis patches in multiple areas, they also diagnosed a condition called adenomyosis. Along with this, the scan notes there are bilateral mass in ovaries, possible endo material but need further examination.

Before peri menopause symptoms and starting HRT I have always suffered with horrific periods…large clots, debilitating pain, nausea etc etc…unfortunately my GP’s have never been particularly interested in looking into this further and it was just a case of get on with it. I was offered a coil on two occasions but they were unable to actually implant this despite (painfully) trying.

So now I have been referred on what was the 2 week pathway, which I’m great full for and am having a c125 test? My appt came today and isn’t for another 3 weeks.

My concerns are that as I was unaware of endo and have been taking HRT, could I have made the whole situation worse? I have been feeling a bit angry that I was never taken seriously when I complained multiple times over the years about the issues I was having with my periods, I was unable to go out for 2 days a month due to sickness and flooding!

I’m carrying on with HRT as usual for now as I’m scared of meno symptoms returning,but I’ve reduced the gel by a small amount.

My appt with meno clinic was booked in May 23 and I was given a telephone appt for July 24, I’ve only been seen by GP last two years, so I’m glad I’m seeing a gynae now!

I know that’s a lot of talk…TBH ot just feels good to get it all out, so thanks for listening 😊

[Banjo1973]

Gosh, that's really shocking. I'm so sorry that's happened to you. I'm not surprising you're angry, being fobbed off by people who are supposed to look after your health is disgusting.

I can't offer any advice, I can only send love and support your way.

Keep us updated x

[Twinmummi123]

Thank you Banjo, I slept better after writing how I felt…I posted that gone 1am as couldn’t switch my brain off!!

Thanks again…sometimes just being heard is enough ❤️

[Jules]

So nobody advised about the HRT? The first time I had spotting and referred for scan, my GP advised me to stop until he knew what was happening and I was only on topical HRT. Possibly over cautious but he's a good GP so I was happy to do it. I've had a few blood tests for same thing. A raised level is an indicator of ovarian cancer.  I'm not sure how reliable it is but I've always had them when I've had pelvic pain of that nature. I'd check if the hospital has a specialised support nurse linked with the department. See if you can get some professional advice about the HRT

[Penguin]

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

[CLKD]

How awful!   GPs really should pull their heads out of the straw bales and listen to patients 

A GP should at least have referred you to a gynaecologist in the early stages, I too suffered very heavy, clotty periods with nausea, I went on The Pill at 17 which eased symptoms. 

I would ring your Surgery and ask for a referral to a dedicated menopause clnnininc or ring the Gynae Dept at your local hospitals [or read the web-sites] to see whether there is a menopause specialist and make an appt.  Some Gynaes have done training so mayB more knowledgeable about HRT.

Let us know how you get on. 

[Twinmummi123]

No, no advice. Just the referral, I had to chase the scan results myself.
I’ve tried calling GP, the women’s health Dr is on leave…the hospital clinic isn’t open until next week either.
😩

So nobody advised about the HRT? The first time I had spotting and referred for scan, my GP advised me to stop until he knew what was happening and I was only on topical HRT. Possibly over cautious but he's a good GP so I was happy to do it. I've had a few blood tests for same thing. A raised level is an indicator of ovarian cancer.  I'm not sure how reliable it is but I've always had them when I've had pelvic pain of that nature. I'd check if the hospital has a specialised support nurse linked with the department. See if you can get some professional advice about the HRT

[Twinmummi123]

Thanks for the reply.

Yes I saw that when I searched it up…I am bleeding again today, have endo and fibroids according to the scan last week!
The GP just said that the clinic will expect that to have been done.

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

[Twinmummi123]

I’m nearly 50 and have been to the Drs countless times over the long years of periods with no help. Evan when I was suffering from peri symptoms the GP wouldn’t even consider prescribing HRT and I had to go private.
I have been referred to the local menopause clinic, the referral was done May 2023 and I have a telephone appt July 2024.
It seems here you are just left to get on with it!

How awful!   GPs really should pull their heads out of the straw bales and listen to patients 

A GP should at least have referred you to a gynaecologist in the early stages, I too suffered very heavy, clotty periods with nausea, I went on The Pill at 17 which eased symptoms. 

I would ring your Surgery and ask for a referral to a dedicated menopause clnnininc or ring the Gynae Dept at your local hospitals [or read the web-sites] to see whether there is a menopause specialist and make an appt.  Some Gynaes have done training so mayB more knowledgeable about HRT.

Let us know how you get on.

[Penguin]

Thanks for the reply.

Yes I saw that when I searched it up…I am bleeding again today, have endo and fibroids according to the scan last week!
The GP just said that the clinic will expect that to have been done.

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

Oh that's good, I just wanted to offer reassurance in case you were concerned about it x

[Twinmummi123]

Thank you! It definitely is reassuring… to be honest I’m not worried about cancer as much as a big mess of endo made worse due to the HRT!

Thanks for the reply.

Yes I saw that when I searched it up…I am bleeding again today, have endo and fibroids according to the scan last week!
The GP just said that the clinic will expect that to have been done.

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

Oh that's good, I just wanted to offer reassurance in case you were concerned about it x

[Penguin]

Thank you! It definitely is reassuring… to be honest I’m not worried about cancer as much as a big mess of endo made worse due to the HRT!

Thanks for the reply.

Yes I saw that when I searched it up…I am bleeding again today, have endo and fibroids according to the scan last week!
The GP just said that the clinic will expect that to have been done.

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

Oh that's good, I just wanted to offer reassurance in case you were concerned about it x

Oh god yes, that sounds like a nightmare, so sorry that you have been fobbed off so much.

[CLKD]

Could U take a cancellation appt Twinmummi123?  If a patient suddenly can't turn up for example?

[Twinmummi123]

Yes…I could try and get hold of someone to request that…it’s just so hard to speak to anyone!!

Could U take a cancellation appt Twinmummi123?  If a patient suddenly can't turn up for example?

[Jules]

A raised CA125 level can also be due to endo, fibroids or even being close to your period. Lots of reasons for a raised CA125. There's arguments that it should only really be used for checking progress of women who actually have OC to see if treatment is working or not. Definitely not that reliable an indicator which is why it is always used in conjunction with a pelvic scan.

I didn't know that, I've always been tod it's to check for cancer, though it has always been done along with a scan.