In my 30s and my ovaries are coming out

[Bearlyawake]

Hi, this is possibly too niche for anyone to have relevant experience but I'll throw it out there. I'm in my 30s and having a hysterectomy next week due to cancer diagnosis. It's looking like my ovaries will need to come out and I can't have HRT (type of cancer is fed by estrogen, hence ovaries removed) so I'm going to be slammed straight into menopause. I'm obvs dreading it. I think I should be referred to a menopause speacilist but who knows how long that will take. If anyone else has experience of this or any recommendations for alleviating symptoms, I'd be very grateful.

I'm really sorry to hear that- must be very hard for you.

The best place in the UK for NHS referrals is the menopause clinic at the Chelsea and Westminster Hospital; they see women from all over the UK.

There is a link on their website for the menopause clinic. It does say they are closed at the moment but I'd not take that as gospel as the website may be out of date or they may be doing phone consultations. The lead consultant is Nick Panay who also works privately if that is possible for you (or I know other equally good consultants in London.)

Do you mind my asking what the cancer is?
If it's endometrial, I am pretty sure that the info online ( proper medical websites, RCOG guidance) says that women can use HRT once the uterus is removed and if the cancer has not spread.

Have you had a definite refusal for HRT? or sought a 2nd opinion?

Not sure if this link works as it's so long to c&p but here goes- it's the Cochrane report.

www.cochrane.org/CD008830/GYNAECA_hormone-replacement-therapy-hrt-women-previously-treated-endometrial-cancer#:~:text=Currently%2C%20there%20is%20insufficient%20high,for%20early-stage%20endometrial%20

Thanks @JinglingHellsBells, it's uterine leiomyosarcoma. I'm waiting to hear what the speacilist recommendation is on Monday but its my understanding that HRT won't be advisable. Thanks for the link I'll take a look

I had a radical total hysterectomy at 28. The relief outweighed any negatives. As for the menopause, I suspect age meant that I tolerated(?) it really well apart from hot flushes. I just learnt the art of layering and waftey type clothing for good air circulation.

I could have had hrt and was told I should be prepared to be on it due to family history of osteoporosis, but didn’t tolerate tablets well so was prescribed patches which no pharmacist could find after the first month - I never bothered in the end.

Good luck btw. Please don’t rush your recovery from surgery. Rest, rest and rest some more.

@Bargebill19 Please have regular DEXA scans for your bones. You ought to have one every 3 years at least.

The likelihood is you will get osteoporosis, as you have no estrogen 22 years too early and a family history of it, and the medical advice is HRT to age 50 at least to protect heart, brains and bones- these are serious issues.

Its a very serious- a disabling condition. Please re-think and perhaps see a menopause consultant to assess what you do next.

I went straight into menopause after my first dose of chemo for breast cancer & didn’t notice too much in the way of menopausal symptoms, although of course I had the chemo side effects at the same time. I didn’t have tamoxifen because mine was the other kind of tumour (was 20 years ago, I’ve forgotten the terminology).

My periods had been very heavy for a couple of years so them stopping was a massive relief, but I was nearly 50 so I was probably perimenopausal already.

Good luck with your surgery and recovery. I hope they will refer you quickly for specialist menopause care.

I had regular dexa scans up to 40yrs. Had the bones of an 18 year old. I eat a lot of calcium and do a lot of weight bearing exercise, neither of which my sister of mother did. My lifestyle is very very different to theirs. I’ve not bothered since as getting anything preventative in the way of treatment from our GP, is a total pain, and usually results in a trio to the hospital mikes away.
My heart is very healthy despite being told not to eat any calcium according to the dr the last time I did go to hospital - for an asthma attack which the dr refused to prescribe prednisolone for, and which I did need according to the hospital. ..... at this rate it’s my lungs that will give up way before anything else. But thanks for worrying - that’s really kind.

@Bargebill19 40 is too young to stop your DEXA scans. I had osteopenia in my late 40s and have had scans since for over 15 years.
Exercise and diet are good but they don't prevent osteoporosis in women with surgical menopause- that's why the experts say use HRT.

For peace of mind you should ask for a scan.
Even if it shows your bones are healthy.

I'm a health writer and have spoken to many women with osteo and it's no joke- seriously disabling if spinal fractures occur and this can happen in your 50s.

I am in my 50s. ... thanks but no, currently can’t get a flu jab - suspended for the foreseeable nor can I get a medicine review. I’ll not waste my time trying to get something else, when I can’t get those two simple things.

@Bearlyawake look up the menopause support network on FB. Some really good advise and tells you have to get access to menopause clinics / advise.

Good luck. X

Hi OP. I'm a bit older than you at 48, but I had a similar diagnosis this summer and had a full hysterectomy and bilateral oophorectomy as well. I've got straight into the menopause and am also not able to take HRT either because my cancer was probably oestrogen fed.

I can't say it's been fun. Hot flushes and night sweats kicked in for me after about a month. I take one of those cooling dog mats to bed with me every night, straight out of the freezer and wrapped in a towel which seems to help a bit. I've heard sage tablets can help alleviate hot flushes, but I've not tried it myself. Luckily I haven't had any mood problems, although my DH might disagree! My biggest problem is lack of libido which isn't great for our relationship. Apparently testosterone can help, but it's difficult to get in the NHS, but some menopause consultants will prescribe it privately. I'm hoping to get a critical illness payout, then I'll be going private to see if there is anything that will help.

Do try and get a referral to a menopause specialist if you can. Most GPs aren't too clued up on the menopause. I haven't even approached my Dr as my consultant has told me in no uncertain terms that if they find out I've been put on HRT, then they'll take me straight off it.

Good luck with the operation. Are you having it done laparoscopically? If you are, the recovery is much easier. I was taking short walks within the week. Do not overdo it though. I did a couple of times and I was totally wiped out the next day. Feel free to PM me if you need any support. Thinking of you.

Hi op

I had a total hysterectomy when I was 31, I have never had HRT. I didn't have any menopause symptoms at my 6 week check so they never bothered. The only thing I have trouble is with weight around my middle.

I had to have my hysterectomy via my abdomen due to previous c-sections, the recovery was a long road. The first few weeks I had very little energy and couldn't really concentrate for a couple of months. Please take you time to recover and let everyone help.

I hope that the surgery is the only treatment you need.

Oh I have never been offered a scan to check my bones, but will mention it when I'm next with the GP.

Hi @DivisionBelles thank you for sharing your experience and I'm really sorry to hear about your diagnosis. Yes hopefully it's going to be done keyhole, the surgeon has said he will need to take a look and assess due to possible scar tissue from surgery in the summer. It's obviously been a crap couple of months since my diagnosis but I just want to get this surgery over with now and crack on!

@Bargebill19 and @JinglingHellsBells thanks for your comments, bone density is one of things I'm a bit concerned about.

@loubieloo4 thanks for sharing your experience as well

@Bearlyawake you might want to join the Facebook group, Hysterectomy Sisters as I found it a great source of support when I was going through it.

Good luck. The best advice I was given was from an older nurse - don’t cross your legs, do your pelvic floor exercises and use a towel across your incision under your seatbelt, rest and pootle for the next 8 weeks. - she was spot on !!
If you drive - just check you are insured. Both our insurers refused cover until the consultant gave the go ahead or 8 weeks post surgery, which ever was sooner. It was due to the innate reluctance to do an emergency stop, which your surgically damaged body MAY have at that time.

@Bearlyawake You might like to join the support group The Daisy Network which is for women with premature menopause (either surgically or naturally.) It's run by consultants at the Chelsea and Westminster Hospital but is a national charity. Find by googling.

@Bargebill19 It's your choice but all I'd say is take it seriously.
A lot of women assume that because they have no flushes etc they are ok. But the loss of estrogen is the cause of heart disease, loss of bone and also dementia.It's a very serious issue. I'm saying this as a professional writer on these issues who talks to all the menopause experts on these issues.
I pay for my own DEXA scans, privately, and if that is an option for you it may be worth considering. You do have a right to regular NHS 3-year scans based on your history and your GP should sort those.

@Bearlyawake and Barge this is a very good source of info and also if you put premature menopause into the search box of Dr Newson, it comes up with lots of other info.

She's great but my own consultant is even more senior/experienced to her (she rates him highly and he trains other drs) and that's where a lot of my information I share here comes from.)

www.menopausedoctor.co.uk/menopause/early-menopause-and-poi-explained

@Bargebill19

I'm a newbie to the subject but I did read in a study about early surgical menopause that asthma & copd are affected by (alongside bones, heart etc.). Might be worth looking into.