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[Waterdaggers]

I'm scheduled to have a hysterectomy in three weeks and I'm really beginning to question whether I'm doing the right thing!

My history is this.... I'm 43. I had a borderline ovarian tumour removed 5 years ago along with one of my ovaries and a tube. Around 18 months ago (probably due to the surgery) I started going through early menopause. My menopause symptoms were irregular periods, extreme fatigue, low mood, insomnia, skin complaints, aching joints, muddy thinking, forgetfulness, but no hot flushes. I started on HRT about a year ago after a blood test revealed high FSH. Initially started on Evorel Sequi. I found the oestrogen only patch really helped with my symptoms but the progestogen part made me feel almost suicidal and also suffered extreme itching every night. I then started on utrogestan 100mg taken vaginally for 8 nights a month (Although GP told me to take 200mg orally for 12 days a month). Even at this reduced dose I felt totally incapacitated.... nightmares, racing heartbeat at night, zombie like tiredness and headaches during the day. Then withdrawal symptoms of headaches and emotional for the best part of a week afterwards. I know this regime is probably going to be my best bet as far as HRT is concerned and feel I could not continue with this in the long term. I do not really want to stop HRT due to my age, the risk of osteoporosis and the return of all the symptoms I was having before. Therefore I have opted to take the hysterectomy offered to me in order prevent return of my ovarian tumour just so I can continue with just the oestrogen part of the HRT.

As the surgery looms I'm really starting to panic that I might be causing more problems than I will be solving. I can't find anyone who has had a hyst for the same reason as me. I feel like maybe its too drastic? I'm particularly concerned that my sex life will never be the same again (even though I am currently single). Just hoping there is someone who can relate to what I'm going through as I feel like I have no one to ask. 

[Taz2]

Hi Waterdaggers. A bit of a dilemma for you.

I too felt like you did on Evorel patches but all was resolved by me being swapped to FemSeven. Did you give these a try? It is often the norethisterone in Evorel which causes the almost suicidal feelings and depression.

Hysterectomy is not to be considered lightly and it is difficult to say how you will be affected. Orgasms are likely to change and you do need to consider this if you are concerned about a changed sex life. The contractions of the uterus are what gives you the delicious, all consuming feeling. Also, if possible, ask them to leave your cervix - this is also an important part of your sexual anatomy. You will also be more at risk of prolapse as the basic support structure will have been weakened during the op. It's important to get a referral to a pelvic floor specialist - in my experience anyway - so that you can be taught the best type of pelvic floor exercises to help keep everything in place after the op. A lot of these things aren't explained during consultation for hysterectomy so read up as much as you can before deciding. On the other hand you will then not need progesterone which does make HRT much simpler.

I had a vaginal hysterectomy and repair three years ago but I am almost twenty years older than you! The op itself was fine apart from a slight bleeding problem in the few hours after which necessitated being put on a drip for a while. The pain was much less than I anticipated and I managed with just ibuprofen and paracetamol. Recovery took a while but I did follow the recovery plan to the letter (rather boringly some of my family thought  ) I had twelve weeks off work in the end due to a couple of infections. Not driving for eight weeks was a pain but some insurance companies let you drive after six weeks.  Obviously this is a major operation and you do have to consider all of the risks.

Have you had a look at the Hysterectomy UK website? You will probably find someone there who is contemplating hysterectomy for the same reason as you. https://www.hysterectomy-association.org.uk/

Hope this helps. Feel free to pm me if you want more info.

Taz x 

[walkingthedog]

Hi waterdaggers

Obviously i can only tell you my story and how i am and i cant promise you will be the same but i hope to offer you some reassurances
I had a total hysterectomy. On march first this year. The NHS agreed to it as i had womb overgrowth that was getting worse. However, i was keen to have it as i couldn't cope with any of the progesterones , i was like,a different person on progesterone, crying and depressed, and pms off the scale.
Since my hysterectomy i have had none of this. It took a few weeks until i could resume estrogen only hrt but I'm in such a good place it's amazing. No crying over nothing no mood swings no pms.
I'm not on testosterone just estrogen and my sex life with my husband has remained good. I'm a little dry but use sylk and it helps.
I was terrified id feel worse after my hysterectomy but asked myself could i  actually feel worse than i did.
A hysterectomy is a big operation with a long recovery time afterwards and not to be taken lightly, your body may change etc Im still working on my large tummy !
Obviously my story is positive, i just wanted to reassure you that hysterectomy can be a positive outcome. However were all different ..
Good luck xx

[Taz2]

Thanks walkingthedog - it's good to get different perspectives and experiences. Such a hard decision to make and different for each individual.

Taz x

[Waterdaggers]

Thank you both for your replies! It really helps to hear how others have got on. I just feel like the way I am at the moment, that my life is on hold. I'm self employed but barely working due to the way I feel and not wanting to commit to having more clients (I'm a personal trainer) and then not feeling like I can cope. I am also reluctant to get into a relationship until I can sort myself out too. So it feels like I am not really living at the moment. I'm fine just on the oestrogen (although still not where I was a few years ago) but I know that is not something I continue doing if I don't have the hyst in three weeks. I know I could try more HRT preparations, including possibly the Mirena but the reactions I've had to what I've tried so far make me feel like I would rather give up on HRT completely than go through similar again. I've never been able to handle the contraceptive pill either.... one made me very emotionally disturbed.

If I have my cervix left will that mean I can still have oestrogen only HRT? The surgeon never even mentioned his plans there! They don't really tell you much at all to be honest. My job as a personal trainer requires heavy lifting and he told me I could go back to work within 4-6 weeks. Guessing this is probably not that realistic? I will definitely look into these pelvic floor exercises some more. Thank you again.

[Taz2]

I'd definitely check out when you can resume heavy lifting. These are the recovery guidelines I was given by my consultant and they also appear on the hysterectomy association website http://gallery.mailchimp.com/a5692c6457e86f0e2182630fa/files/sbs_recovery.pdf?utm_source=Free+Hysterectomy+Booklet&utm_campaign=30c61c525a-Booklet-14&utm_medium=email

Are you having your operation by laparascopy? The recovery time can be much faster but the same amount of healing has to go on inside as the same ligaments etc are cut to remove the uterus. It's easy to forget that (mine was vaginal) when you don't have a scar.

You are young so your tissues etc will be in better shape than someone who is having the operation done due to prolapse. It is the prolapse risk which prevents some women from taking up any lifting (over 20lbs) after the op.

One other point - you are usually advised to stop HRT for a month before any pelvic operation - well I had to anyway - to prevent blood clots. Maybe different health authorities given different advice on this but I think this was mentioned on here just the other week?

You will still be able to have oestrogen only  HRT but will have to still go for smear tests if you retain your cervix. If you have your cervix removed then the top of the vagina is stitched shut (it's called making a vaginal cuff) and shortens the vagina. There's some good information on the NHS website http://www.nhs.uk/Livewell/Goodsex/Pages/sex-after-hysterectomy.aspx

Taz x 

[Waterdaggers]

Thank you for the links to more information Taz. I'm definitely going to be taken it steady when it comes to heavy lifting, despite what the surgeon said. I'm not sure he really appreciates how much lifting my job entails. I've already decided I will not be doing any heavy deadlifts or squatting myself for a few months. I just don't feel like it will be worth it and I know how much intra-abdominal pressure those exercises create. I'm planning on doing lots of walking instead!

Yes I will be having it done laparoscopically, all being well. I see a menopause consultant at the hospital as well and he has not advised me to stop my HRT (thankfully). He said I should continue on the dose I'm currently on (Evorel 75) and then after 3 months when everything has settled I will see him to review and at that point he will prescribe me testosterone if necessary. Unless of course I get told something different when I have my pre-op.

I'm going to ask about the cervix at my pre-op. If I can keep my cervix and not have to take progesterone then I'll opt for that! Did you keep yours?

Thanks again for the advice.... it really helps! xx

[Taz2]

Isn't it strange how hospitals vary with their stopping HRT advice? I know that at our local hospital you have to stop one month before - only for abdominal or pelvic surgery though - and not restart until six weeks after. It's great that you don't have to stop. Maybe it's because you are younger so the clot risk is less?  Brilliant news that you can be prescribed testosterone!

No, sadly I didn't keep mine. I had my hysterectomy due to prolapse so the cervix was part of the undercarriage-drop.   

Taz x

[Maryjane]

Not had one but I did discuss it with my gynae and women's health physio.

But they said we hang onto our wombs for as long as possible , as they are the scaffolding that holds everything up , and you are very often getting rid of one problem to make new ones, also sounds far to early an assumed recovery time to do what you do.

Re HRT and surgery , its down to again individual opinion I believe ....and anyway if it was an emergency there would be no time to stop anyway....wonder wether pills is systemic make a difference?

Good luck with what ever you decide .

[Annie0710]

I had a hysterectomy at 32 due to complete prolapse.  Cervix needed to be pushed back after last delivery too.  I saved ovaries but they failed so started on hrt soon after

After the initial surgery problems, harmatoma etc I resumed a Sex life and had a great time, always reached orgasm and big Sex drive

We are all so different so I'd suggest follow your gut instinct x

[Tina1957]

Hi
I too have a severe intolerance to Progesterone, so severe causing allergic reactions - I even tried the Mirena, but had to have it removed within the week. I was therefore forced to stop all HRT, but suffered with horrendous, crippling hot flushes!

After trying every other alternative, my Gp referred me to a Consultant - he admitted that the only thing that would really help is Estrogen and to take this long term, I would need a Hysterectomy.  I personally felt this to be a step too far for myself.

I then read about a new HRT Duavee/Duavive available in America that contained no Progesterone, but instead Bazedoxifene and was due to be trialled in the UK.  I contacted my Consultant, who admitted he had heard of it and agreed to find out more about it from colleagues. 

After several months I finally obtained this HRT through my Consultant and have now been taking it for over 12 months.  Duavive has turned my life around, it has stopped the hot flushes and I have experienced no side effects whatsoever - I am once again enjoying and taking part in life again!

Duavive is still not readily available through the NHS (I obtain it on private prescription), but it should now be possible to obtain it through a Consultant.

Tina x

[Tina1957]

Sorry just noticed your age - Duavive is unfortunately only an option for Postmenopausal women.

[Taz2]

Although it doesn't sound to be suitable for Waterdaggers it's a very helpful post Tina. Thank you.

Taz x

[Mary G]

Waterdaggers, Professor Studd recommended that I have a hysterectomy for severe progesterone intolerance and I still considering it - you may want to check out his website where he talks about hysterectomy and progesterone intolerance. 

If I had my time again, I would have opted for a hysterectomy about 20 years ago to avoid all the problems I had with contraception and the horrendous problems I have encounted with progesterone intolerance.  However, work means it is difficult at the moment and I am about to trial Duavive (see para below) and go on from there. 

I do wish you all the best and please keep us updated.

Tina 1957, that is fantastic news, I am so pleased for you.  I bought some Duavive in Spain and I'm going to be trialling it myself.  I'm going to start with Bazedoxifine/2 pumps of gel and then I am going to do Duavive proper and see which works best - my uterine scans will also help with deciding which to go for.

[GuernseyGirl]

See this thread was written in August, has anyone got any new updates? Did you go ahead Waterdaggers?
I am in the same boat re progesterone and hemiplegic migraine. I've been taking Ultrogesten 1 tablet about every 5 days. My Uterus was 4.3 this time I had a scan with my new Gynae, she wants me to have a biopsy and then offered me a hysterectomy? I trusted my old gynae who has retired & don't know anything about this new young lady.