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[Las20]

Hello everyone,

I’m hoping I can get some advice from you.  I had a full hysterectomy nine weeks ago, uterus, cervix and ovaries all gone.  This was due to having endometriosis, adhesions and then constant pain and bleeding along with peri menopause symptoms for years, I’m now 47. 

Prior to having the surgery I was suffering depression, brain fog, lack of libido, joint pains, low energy, night sweats and many other symptoms.  I was put on antidepressants around twelve years ago and the only time I felt able to take myself off them was around four years ago after a visit to see a gynaecologist who prescribed me elleste duet patches.  After being in them for a couple of months my mood lifted and I felt fantastic. Sadly, they were very difficult to get hold off and I had to be changed to a different type. Anyway to cut a long story short, I ended up thinking I was losing my mind and suicidal, so had to go back onto an even higher dose of antidepressants, it was a very difficult time. 

As I said I had the surgery around nine weeks ago and was put onto Oestrogel but again it was difficult for the pharmacy to get hold of so I was changed to two sprays a day of Lenzetto spray.  The difference I’ve found in myself is that my mood has lifted significantly, I’m much clearer in my thinking and feel far more positive.  However, my joint pain is horrendous.  I’ve always had bad hips as I have arthritis and I suffer with back pain but now those pains have intensified and i also have both knees hurting so much. I’m on painkillers and the doctor increased my hrt to three pumps a day but it still hasn’t helped.  I’ve been walking and trying different stretches and strength training exercises but nothing helps.  I’m currently waiting for a call back from the doctor again and last time we spoke he said we might need to try a different hrt.  I’m just wondering what everyone thinks about going from a spray to patches, as this is what he suggests.  I’m worried I’ll go onto the patches and my mood will dip again.

Furthermore, I have no libido, I haven’t had for years and I’m losing my hair.  Weirdly prior to the operation I had some hair on my lower back but that has almost gone completely, so I’m wondering if I might be lacking testosterone?

I feel like an elderly person, I had such high hopes after the surgery and when my mood improved I honestly thought my life would begin now.  Instead I’ve gained weight and struggle to do simple things like put my socks on and walk up and down the stairs.

I have been off work for a while and I’m now lying to my family about not working as I feel like they think I’m being a hypochondriac.  If I explain the degree of pain I feel it sounds unbelievable so I don’t say much.

I watched the Davina show last night and cried from start to finish, I felt it was totally me even to the point of wanting to drive my car off of the road.  I just want to feel normal and don’t know how.

I would be very very thankful for any advice you can give me. X

[ATB]

I’m so sorry you’re having such a difficult time, you’ve really been through a lot. I don’t know how you’ve done it!

Personally I think we do need testosterone as well, I’m on it and honestly it helped so so much. I still have my uterus, I don’t think that makes a difference with that but I’m not sure. My every levels increased the most when I added it, after 7 years of hell. I have better concentration, less brain fog, mote motivation, I exercise every day no matter what, I have better muscle tone and some aches have gone. I’m 46. Hair loss can also be low stored iron, ferritin, or low thyroid hormones. So you may want to look into those. I’m again sorry to hear of your problems, it’s just awful. Huge hugs for what you’re going through. Oh, I have gone from gel to patches and much preferred it, I seemed to absorb it better too.

[Gnatty]

Hi there, I do sympathize  - I had virtually the same operation last summer. I would say firstly that it's great you feel so sorted mentally and so soon, it took me rather longer.

Yes yes to testosterone, you no longer have your ovaries so you need it far more than those who still have them. Also of course you will need more oestrogen than before  your operation too. Three squirts of Lenzetto is actually not very much, as it isn't as strong as was originally thought.

I have stuck with oestrogel, I did try patches briefly but didn't get on, mind you this was when I was really struggling mentally in the early days after my surgery. I have found I need 5 pumps of oestrogel when it is the green square and I suspect I may get away with four on the yellow square. Re testosterone, I am prescribed testim in tubes. Initially I made one last ten days but after blood tests showed still low levels I now use one tube every week.
I am telling you what I need as it will hopefully help you, especially if I tell you I am 56 so maybe don't need as much as you, being only a spring chicken!!
You will get sorted, I know how hard it is though and am happy if you want to message me privately x

[Louise2010]

Hi Las
I appreciate how you’re feeling having had a sub total hysterectomy and despite retaining my ovaries felt plunged into the hell you describe. It really is a horrible experience and I’m sending you a virtual hug Las. 🤗

I agree with both ATB and Gnatty. I can say that Vit B6 & 12, magnesium and testosterone added on to my oestrogel (4 pumps split am & pm) plus mirtazapine have helped. I think testosterone is very important. I have a hunch it has an integral role with oestrogen in me and if I remove it things start to creep back.

I totally get the playing down your symptoms and pain with your family having been in this situation with my immediate family who are the last bastion of post war, stiff upper lippers. You’ve been through a lot and taking time for yourself and saying no is vital too I find.
Here on private messaging if you want to get in touch. You’re not alone Las. Xxx

[sheila99]

I would get you oestrogen levels tested if you can and see where you are. Usually it's about the dose and changing to equivalent dose won't make much difference unless you absorb differently. Lenzetto seems to be weaker than they say it is. What dose of patch are they planning to put you on? Usually but not always the dose that controls some symptoms controls all of them in time (at least 3 months) and it's possible your joint pain isn't due to oestrogen deficiency. For libido you need testosterone for which you usually need a referral to a menopause clinic. Testosterone has improved my muscle tone as well as libido so it's possible it will help your joint problems. Before it I was repeatedly pulling muscles and libido was zero.

[Las20]

Oh my goodness what lovely kind people you are 🥰 thank you so much for the advice and offers of support.

I’ve just returned from the Doctors, I didn’t see your replies until now so didn’t put it to her about the testosterone. She wants me to have bloods done to check for rheumatoid arthritis amongst other things like thyroid, vid d etc. She also wants me to have an X-ray on my hips to see if my arthritis has gotten worse and prescribed some kind of painkilling patch? I get a sense this will be a bit of a long process but she wants to speak to me in two weeks and has signed me off for that time.  Now I need to explain to the oh that I won’t be working for a while longer.

I don’t think they are sure about how much hrt to allow you, so maybe a menopause clinic is a better option but I can imagine how long the wait will be.  Or I wonder if I can/should try to get the testosterone privately? I might look into it. 

Again thank you all! Xx

[sheila99]

Is there any menopause support associated with your hysterectomy team? It might be quicker than an NHS meno clinic. I think the wait depends where you are but it's many months in my area. In your shoes if I could afford it I'd go the private route rather than a meno clinic just because it's so much quicker. Suggest you use a specialist on the BMS website.

[Las20]

I’ve been discharged from the hospital so no I don’t think there’s a menopause team.  However, I have a private doctor telephone consultation booked for tonight so was going to ask about the testosterone. Not sure if this is the right route but I doubt he will prescribe if he isn’t happy. Xx

[ATB]

Las i see someone at Newson Health who have the female testosterone, the NHS gives the standard one designed for men. Newson do have a long wait time to see them but I really think it was worth the wait for me personally.

[sheila99]

It may be an advantage he's male, he'll be used to prescribing it to men so hopefully won't be quite so paranoid about giving it to you. Hope you get sorted.

[Las20]

Morning everyone,

Sadly, the private Dr wouldn’t prescribe the testosterone and told me it will need to be prescribed by a menopause specialist as I’ll need to have bloods etc. I get it and appreciate that it’s best to know what you’re missing and only replace what’s needed but unless I pay for a private consultation which in its-self has a wait time I could be waiting forever!

I’ve had a look at the Newson but it looks as though it’s going to cost a lot for an initial consultation, bloods, follow up consultation then the prescription and medication. In the current climate and considering I’m off of work at the moment I just can’t afford it.

[ATB]

So sorry to hear that Las, it’s not fair it’s so expensive and some people can get it but others can’t. I had to save for years before doing it and I find it hard to maintain the £80 every 3 months for it but it’s made such a difference.

[sheila99]

I'm not quite sure where you should complain to, perhaps start with the GP or the hospital. They've put you in surgical menopause without the support you need. I wonder if you could be fast tracked to a meno clinic, or if the gp could prescribe based on a conversation with them? The other possible option would be an email with Dr Currie if the gp will prescribe based on her recommendation. There are cheaper and quicker places than newsonhealth, there's an online one that someone used but I can't remember it's name. You could try a search or start a new thread to find it.

[Floradora]

Hi Las. Sorry to hear that you’re feeling so dreadful. I too had endometriosis for years so can understand at least some of what you’ve been through. It’s still a relatively short while since you had your hysterectomy so it’s not surprising that you are still recovering. Your follow up support sounds like a complete disgrace. In the short term I would ask your GP for an urgent referral to your nearest NHS menopause clinic. I would also ask to be put back on an estrogen patch immediately rather than the Lenzetto spray. It sounds like you got on well with a patch in the past and it may be that you aren’t absorbing the Lenzetto. That will at least be something you can try whilst waiting for a slot at the menopause clinic and you may well find that alleviates your symptoms. Not everyone gets on with all forms of estrogen delivery and it could be that you are absorbing virtually nothing from the spray. Hope you get the help you need soon x

[Pippa52]

Really feel for you - I had a surgical menopause at aged 42 so I absolutely understand how you are feeling.  I am now 69 and was on Oestrogel until last year when I was changed onto Lenzetto as was not absorbing Oestrogel anymore.  Having real problems getting the dose right still so totally understand where you are coming from.  Do hope you feel better very soon and they can crack whatever it is that is causing your symptoms xxx