Surgical menopause

[dirtyfabulous]

am looking having a total hysterectomy including oophorectomy. I had an ovary removed 11 years ago due to a borderline ovarian tumor. I'm mid 30s now& my family is complete.
My oncologist wants me to wait 6 weeks for HRT. She doesn't like the idea of an oestrogen implant. From what I have read some women have HRT immediately.
I have an appointment coming up & I really want to tackle the issue of HRT,it's mode of delivery & when I get it.
I have a young family, I need to be as functional as possible & I feel like my needs post surgery are just not important. It's causing me so much anxiety.

Sorry I should have added that I would love to hear from anyone who has experience of this issue.
Many thanks

I had a total hysterectomy and BSO about ten months ago. I'm a fair bit older than you but was still having periods, so went into immediate menopause.

Within 48 hours I was sweating though clothes and sheets x3 an hour. That's an hour.

I had already arranged with my surgeon and GP to have a supply of oestrogen (Evorel 50) patches, and put one on, and I was back in the land of the living 24 hours later.

I'm still on the patches. There's so little risk with patches. And I'm like you - I need to function.

I've not had this operation, but have had cause to read up on oopharectomy. I'm not surprised you are feeling so anxious.

Ultimately, it's your body and your life, and your needs after surgery are just as important as any other consideration. In my experience the NHS can sometimes be a bit shit at recognising this and responding appropriately. Staff forget that their patients are human beings who exist beyond the few minutes they spend with us. So it's not you that's the problem here and you are not being unreasonable.

Ultimately, your doctors can explain the risks and benefits to you, but the decision should be yours. It is your body and you have to be able to live with the consequences of what they do to it. They owe you a duty of care after surgery, not just during surgery.

I am really not surprised this is causing you anxiety. You have every right to advocate for yourself and state what you want and need in this scenario. Has your oncologist discussed with you their reasoning, what the risks are, what the benefits are, etc? Have you had the opportunity to weigh it up yourself and make an informed choice? Or have they just told you no?

If the latter, then you may need to be pushy so that you are involved in the decision and have all your options explained. The GMC requires doctors to explain the risk and benefits of all the options before a patient, not just to impose their own view on you. So by reminding them of their responsibilities you are not doing anything wrong.

Once you have that info you might feel differently, but at least you might not feel so powerless if you have more knowledge, have taken charge of things a bit more, and have had the opportunity to discuss in depth and find out about all your options. Feeling powerless can make anxiety so much worse.

It's not acceptable for them to put you through such significant surgery with no consideration or planning for the impact it will have on your life. You are a person whose life is valuable, and this stuff matters. Remind yourself of that if you need to push a bit to make yourself heard.

I had a total hysterectomy 3 years ago when I was 42. Best thing I ever did.
Started taking HRT immediately after - tablets - and had to up the dose a bit after a few months.

Thank you for the replies. It means a lot.

AutumnCrow the immediate physiological responses like you have just described fill me with fear. I cannot imagine 6 weeks like that. It is very reassuring to hear that you responded so well to the patches. I hope you continue to feel well.
It's not just the immediate day to day symptoms that concern me, it's the long term risks to my heart & bone health. I had a senior consultant tell me I didn't need to worry about heart disease because I am not overweight. She felt I should not have HRT at all. She said this to me so blasé,when I questioned it she said they could give me a blood pressure medication to control hot flushes. I was so upset after this appointment.

AnoukSpirit the subject of HRT was instigated by me. It simply was not something that was discussed and when I did bring it up I felt that I was being told what would happen. Options regarding HRT have never been discussed with me. I asked about the implant & was told 'I don't like the implant, it has too much oestrogen'. I'm embarrassed to admit to this but I kind of freeze when I'm faced with my oncologist. It reminds me of a very traumatic time in my life. I had open surgery to remove my ovary when I was 18 weeks pregnant & was made aware of the risk to my baby(all was well) I feel like I'm being spoken at as opposed to having a conversation.
You are so completely right that the lack of planning or consideration post surgery is unacceptable.

Mizu I'm delighted to hear it all worked out well for you! Hearing the positive is very comforting.

I had a total laparoscopic hysterectomy last week and was started on patches before I left the hospital. I was terrified of surgical menopause too so I was really pleased that this was their policy. A week in and so far I feel fine, exhausted and a bit sore but mostly okay.

I had it done at 39 and the nurse stuck patches on me as soon as i came around after the anaesthetic. The consultant says i have to stay on them til im 52. I recently tried tablets but if i was even an hour late taking it in the morning i could feel the hot flushes and felt rotten so its back to the patches for me.

Flippidyflap thank you for replying. It's really good to hear from someone who has been through it so recently. Have you had any flushes or night sweats do you mind me asking?

Tillylantern do you feel similar to how you did pre surgery whilst on the patches?
I have this fear that I won't be myself again after this surgery

No flushes. I get a bit warm at this time of the evening but I don’t think it’s a flush, I’m not sweating. I’m on Everol 50 patches and have heard that the dose may need to be increased in a few weeks so I don’t know whether the flushes come on later or whether how I am now is it. I was in and out so quickly that I didn’t have time to discuss it really with the team. I have appointments with me GP in a few weeks and am hoping to get more information then.

Do you know why they want to wait for 6 weeks before starting it?

My surgery was necessary due to severe endometriosis. At that stage as well as unbearable pain I had been bleeding very heavily nonstop for months on end. At times i could soak thro multiple layers of pads in minutes. My toddlers nappy bag contained more changes of clothes for me than it did for her. So anything post surgery was a huge improvement. Plus Id had to have a chemically induced menopause just before sugery and id had one a few years earlier. I actually cried and begged my constant not to do the chemical one. Without hrt Im not a nice person. Apart from the hot flushes, (u dont appreciate how bad they are til u experience them) I get very angry like 0-100 in seconds, ive no patience, cant sleep and no filter. Im likely to say whatwver comes to mind. Its horrible. I wouldnt give up my hrt for anyone. But everyone is different.

If you are having surgery my top tips are:
Start taking arnica tablets a week before the sugery and as soon as you are allowed to eat afterwards. Take them for at leadt a week afterwards. It really helps to reduce internal bruising. I had quite extensive surgery as my endometriosis was so bad. 5 days post sugery they were explaining about going to my doctor to get the staples out and they examined the wound. The centre was almost completely healed already they couldn't believe and the dressing was spotless.

Move as much as you can. The day afyer the sugery the told me i had to walk a little and brought me to the toilet. I went for several tiny walks that day. By the 2nd day i was walking the length of the corridor every hour or two and by the 4th day was walking mini laps. I almost skipped out on the 6th day.

The arnica helped a lot but so did the regular mini walks.

Best of luck.

My op was done by key hole surgery. Goodness knows how so no staples. I was home the next day. Rested for 6 weeks before going back to work. Luckily I went back just before the Xmas hols and then had two more weeks off which, looking back, was needed.

Like I said before, I have never regretted it. It has changed my life.

I've not had the oopherectomy issue but I'm 4.5 weeks post total hysterectomy via LAVH and it's amazing to not be bleeding.

I wonder if there's a gynae you could speak to instead? Was your cancer oestrogen dependant? Sorry, I don't know much about it but I know that if they had put me into medical menopause as they initially planned they would have wanted to avoid the patch or HRT as I have an oestrogen imbalance and oestrogen based breast cancer runs in my family.

Is the reason for avoiding HRT post-operatively and possibly all together related to the type of tumour your oncologist is concerned about?

I'm assuming some sort of pre-cancer changes or ambiguous results have led to the recommendation of such extensive surgery in someone so young. Will they be testing the tissue removed for signs of cancer?

Flippidyflap I'm glad to hear that so far your recovery is going well. Long may it continue. Great you have a GP appointment on the horizon too so you can discuss everything properly.

Flippidyflap What you have described previously surgery sounds so difficult & must have had such a big impact on your day to day.
I presume the chemical induced menopause meant no hrt? That must have been so challenging.
I will definitely keep what you have said in mind about arnica when the time comes. Taking them was obviously very effective!
Thank you both for sharing your experience and the helpful advice.

I am 18 months post surgical menopause, I had no hrt but was older anyway. I did experience bad hot flushes and sweats, but these have settled to just the odd ones here and there and are bearable.

If you really can't have hrt then it may not be too bad.

mizu again it's so good to hear the positive experiences right now.

alwaysneedgin no the types of tumor I had was not oestrogen dependent. My oncologist has said I may never have another issue again. Borderline tumors are not malignancies but not are they benign. It is very difficult to get your head around.
I am thinking about a second opinion on the HRT front.

scaevola Yes they will be testing the tissue once it's removed. I had my remaining fallopian tube removed last year. It is believed that some ovarian tumors originate in the fallopian tube. The surgery was done "as a good holding measure" until I commit to the hysterectomy.
My oncologist does not have an issue with taking HRT as a general idea& has told me she is happy for me to take a low dose of it. I need to tease out the reasons for the 6 week wait. I'm worried the dose will be too low for both my short & long term health.
The 6 monthly ultrasounds & bloods cause douch anxiety. I'm a wreck leading up to each appointment. They are six monthly at my request, I could just go annually but I prefer the reassurance. I am reminded however that the ultrasound is a screening and not a diagnostic tool. Living with this level of uncertainty is really starting to take a toll on my mental health.

Thank you fenneltea ( love this tea!) It's good to hear things settled down for you after a while!
I'm hoping all of this won't be as bad as I'm building it up to be. Maybe that's wishful thinking though .

Honestly, for me the relief at not dealing with the pain of adhesions and constant flooding periods was wonderful, I'd have quite happily had the flushes in place of that, and while they weren't pleasant, they weren't absolutely terrible. I knpw several others who have been fine without hrt, and I really hope you are one of these if you aren't allowed it.
It's one of those frustrating situations where you just don't know how you're going to be and I can recall similar apprehensions when I was waiting for my op; if only we had a crystal ball eh?