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Surgical menopause aged 24

(14 Posts)
andie1701 Thu 09-Jul-15 15:05:24

hello all I'm new here so hope posting in right place? I really need help and advice please bare with me while I write this all down!
I had surgical menopause aged 24 due to severe endometriosis & t9 cells I am now 39. I have been on and off hurt for nearly all the time iv been in menopause, drs can't seem to find right doesage for me atol. I was on hormone pellets and that was only thing that worked wonders then they took it off market! So this last 4 years iv suffered horrendously with really sore bones and joints, had multiple X-rays and Maris which all show nothing wrong yet they give me steroid injections into knees for the pain? I recently got a Dr to listen to me who gave me my sexy report from 5 years ago that said I had osteopena and my t score was -1.9 should I not be on some sort of medication for this now considering that was 5 years ago? Also my spine is very bad I have degenerative changes but am still being left in constant pain! I'm on 1mg hrt that I would have thought is too low for me, constantly tired, depressed, moody, no sex drive atol, so any suggestions from you lovely people would be great as to what I should do now. This is my life they messing with!

too young to feel this old

DayLillie Thu 09-Jul-15 15:15:35

www.daisynetwork.org.uk/

Daisy network is specifically for younger people going through menopause and may have more relevant information for you.

My friend who had endo and hysterectomy etc in her 30s has patches which have to be fairly low dose so as not to start any more endo problems. She does have joint problems, but the hrt is high enough to minimise this.

Also try www.endometriosis-uk.org/

Maybe ask to be referred to a menopause clinic www.menopausematters.co.uk/clinicfinder.php

pinkfrocks Thu 09-Jul-15 15:17:16

Oh you poor thing.
Please ask your dr for a referral to a specialist gynae who can help you.

Two things- you ought to have a bone density scan every 2-3 years.

If your T score was -1.9 5 years ago that was heading towards osteoporosis which is -2.5

You need to see both a gynae, and a rheumatologist- they deal with bone health.

First step is an up to date scan, next step is medication which for women under 60 can be HRT- so you may well need 2mgs not just 1mg which is very low- many post-meno women are on more than that as they need less oestrogen.

Please press for this and don't be fobbed off.

andie1701 Thu 09-Jul-15 15:18:00

Iv had patches, tablets, implants, injections nothing seems to work, feel like a human guinea pig tbh nearly 16 years on and still they haven't sorted out proper dose. This bone pain worrying me tho because surely if I'd osteopena 5 yrs ago they should be taking fact I'm sore all the time more serious.
Xx

andie1701 Thu 09-Jul-15 15:20:04

Pinfrocks- Dr told me because it says on dexa scan to be repeated in 10 years he can't make them see me?
Xx

pinkfrocks Thu 09-Jul-15 15:21:04

The MOST important thing to have done is your DEXA scan.

The HRT may have improved your bone density, but it might not have. if you also have degenerative changes in your spine this needs expert advice- do you have loss of height and crushed vertebrae/ fractures, or is it pain from loss of collagen?

pinkfrocks Thu 09-Jul-15 15:22:45

He's talking nonsense. I have had them done every 2 -3 years since my late 40s. You can pay for one privately if they won't but every 10 years when you have established osteopenia is totally wrong. I know other people with this and they all have scans every 2 or 3 years.

andie1701 Thu 09-Jul-15 15:24:14

Iv lost a foot in height, I have bulging discs in lower spine and I have degenerative changes in mid thoracic spine. My knees constantly ache as does my back. At moment I'm waiting results from si joint X-ray as they think that's what's causing the pain in bottom of back. Iv not seen gynae since they stopped the hrt pellets under skin. They were best ever! Now it's just my gp o who deals with me and tbh hasn't a clue

pinkfrocks Thu 09-Jul-15 15:42:33

You have lost a foot in height? How tall are you now?

Okay- you need to insist on a referral to specialists. This is simply outrageous. If someone has lost more than an inch in height post menopause then the advice is that they see a specialist for scans etc.

The National Osteoporosis Society (online) has a help line. Phone them and ask for advice on what to say to your dr. If your GP refuses, change to another GP in the practice, or change to another practice.

andie1701 Thu 09-Jul-15 15:44:40

I was 5ft 5 I'm now just under 5 ft 4, putting on a lot of weight as can't exercise for back .
Thank you so ,I have ill go give them a ring see if I get any where with them.
Just so frustrated!

pinkfrocks Thu 09-Jul-15 18:34:08

Am confused confused you said in a previous post you'd lost a foot- 12 inches- but your post above says an inch.

andie1701 Thu 09-Jul-15 18:44:36

Omg how thick am I. So sorry just worked this out myself! See even my brain doesn't work!

andie1701 Thu 09-Jul-15 18:46:43

right now iv worked it out. I was 5ft 5 I'm now just under 5ft 4 ��

Bellaciao Sun 12-Jul-15 17:18:10

As a matter of interest have you been taking anything (ie a progestogen) along with the oestrogen as part of your HRT to control the endometriosis or are you on Elleste duet conti which gives continuous progestogen? I agree this might be too low a dose but I presume you need to be careful because of the endo elsewhere in your body? You could discuss with your doc possibly doubling the dose to 2 mg? There are also other preparations with different progestins in them but the one is Elleste Duet conti (if this is the one you are on) - called norethisterone - is very efficient in preventing endometrial stimulation from oestrogen so I guess this would be best also for endometriosis?

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