Surgically Induced Menopause - How bad is it?

[50ftQueenie]

I had a large ovarian cyst removed nearly 7 weeks ago and was told on Thursday that it was borderline malignant. The consultant wants to do a total hysterectomy but as we are undecided about a third DC (and I am only 32!!!) opted to would monitor me instead. I am going to seek a second opinion as I have found conflicting information about borderline ovarian cancer. DH and I have had long discussions about another baby and have decided that although we would ideally want another baby it might be better to preserve what we have than risk having another child. (We might change our minds again once we have a second opinion, depending on what is said)

Therefore I am seriously considering the option of a total hysterectomy. I am obviously very very worried about the effects of surgically induced menopause as from what I have been reading it sounds horrific! I am concerned that on top of feeling low about losing my chance of having another baby that I will suffer from the terrible depression associated with being immediately thrust into estrogen withdrawal. I know it is probably a sensitive issue for anyone who has been through it, but I would be grateful if someone could let me know what I'm in for and whether HRT helped at all. Thank you in advance.

Bump

I had an instant menopause caused by radiotherapy to my pelvis.

It wasn't good. Part of the problem for me was that I was very ill and didn't know what was causing what. Although I had been told that the treatment would turn off my ovaries I was too unwell to think about asking questions such as "how quickly".

Afterwards I realised I'd had my first hot flush in the second week of daily radiotherapy. It took me six-eight weeks to realise I was going through the menopause. As soon as I realised I was put on HRT patches and I was fine (well, fine for a very ill person) within a week . I've been on HRT since and have been pretty much "normal".

I'm no longer ill but have one final bit of surgery planned. After this my GP will consider what to do with me long term. I'll have been on HRT for two years or so. I was forty when it happened, with two small children. Although I would have liked it to be my choice, at my age, and with two children, losing your fertility is not such a terrible thing. All the other things that have happened to me have been pretty shit, so it puts it all in perspective. You are ten years younger which does put a different spin on things.

The six-eight weeks between entering insti-menopause and realising what was going on were pretty shit. I was very confused and couldn't manage anything. I was so confused I couldn't work out I was going through the menopause despite having been told about it! Presumably this wouldn't happen if you had a hysterectomy? They should be able to plan for that.

Sorry this is rambling and incoherent. My three year old keeps interrupting me and my train of thought with his latest plans for creating things out of cardboard boxes.

Sorry to hear you had such a shit time of it ThingOne. I don't suppose menopause is something you would have really thought about if you had lots of other things going on at the same time. My understanding of what would happen with me is that you would go to sleep prior to surgery fine and wake up post-menopausal. So you would wake up suffering depression, sleeplessness, tearfulness, hot flushes, and all of the other lovely things that go with it. There is no gradual reduction in hormone so it hits very hard, sounds similar to what you went through. DD is only 11 months at the moment so I would want to wait until she was less dependent on me and is no longer breast-feeding as I imagine it menopause would force me to stop that. I am feeling very sorry for myself at the moment as my mum has only just gone through menopause so I feel far to young to be facing it. Thank you so much for sharing your experience with me.

Anyone else?

If you have a surgically induced menopause you must be given HRT unless there are other medical reasons why not- otherwise you are at severe risk of osteoporosis. In terms of safety, it is supposed to be taken until you are in your 50s, when you would have normal meno.

If I was you, I'd be wnting to knowm ore about the cyst- how borderline was it and can they not be more certain either way? I have a small cyst which is being monitored and was told that they either are, or are not, cancerous.
Can you get a 2nd opinion?

Thanks purplepeony. I am going to get a second opinion as I have read lots of conflicting information from credible sources on the internet. I didn't ask many questions at the time as I was quite shocked by the news. I had been told all along that it all looked a-ok and even after the op they said they had no concerns. Obviously they couldn't say for certain until cyst had been checked completely but we were feeling confident. From my understanding borderline is essentially very low risk stage 1. This provides the best description I can find.

Do you live near London as I have a very good gynae if you could go privately?

Could you ask for just removal of that ovary?

The offending ovary and tube are already out. That is part of what I don't understand about the necessity to remove everything. I am indeed very near London, about 50 mins on the train to Victoria and would be willing to pay for a private consultation. My email is m i c h e l l e _ e m m a @ h o t m a i l . c o m if you could end me the details please. Thank you very much!

Have emailed you.

Let me know how you get on.

Thank you very much. I will let you know.

Hi Queenie
As I mentioned on the other thread, I had an ovarian cyst which was benign but they couldn't be absolutely certain until it was removed. I work in Pathology so the benign/borderline/malignant thing is a known and familiar concept, but it was still a tremendous shock to be personally involved IYSWIM?

The op was ok, depends on approach, because of the size of my cyst (20cm) it was a vertical incision but it has healed well. Recovery was fine, I had 12 weeks off work, but felt better quicker, a lot of it was getting my strength back.
I started taking HRT 2 weeks post op. During that two weeks I had no menopausal symptoms at all, so it isn't an on/off switch scenario IME.
The hyst was over a year ago and I've not experienced any menopausal symptoms so far apart from slightly drier hair and as am in mid-30s will need to take it until I'm 50.

My gynae advised a total hyst plus BSO, so this would have triggered a surgical menopause (without the HRT). The reason the gynae gave me for having the TAH BSO because there are some tissues present elsewhere locally which have similar cells where an abnormality could spread to and develop. If the tumour is a Stage 1a then this is unlikely and this does not mean that is your situation at all - just a reason why some surgeons would prefer to go the further surgery route.

The diagnosis of a borderline tumour can be unpredicted because it is usually a histological one. Generally the histology plus CT/MRI and clinical impression at time of op will have been discussed at an MDT (multi-disciplinary team) meeting where gynae/radiology/histology meet as a peer group.
It may be worth asking if your case has been discussed and what the outcome was.
Also check if your hospital is the regional cancer centre - if it isn't then have you been referred onto them? In my area, the DGHs have to refer your type of case into the specialist centre who are more up on what to do next etc. If you haven't been then please do ask to be seen there.

Thank you again Bella. I have learned so much more from MN than I did from my dr! Seems as though I have lots of questions to ask. Looking back the appointment seemed very odd, I wasn't really told anything. Only asked if I wanted a total hysterectomy and told that I needed a CT scan. He was very dismissive and certainly didn't mention treatment for cancer, only that it was a possibility that it could spread.

I'm pretty certain you can continue breastfeeding through the menopause. I'm sure I've heard of it but I'm not sure where. Why don't you post on the bf board and ask advice from tiktok or one of the other bfcs?

I had to stop as I was having chemotherapy which is obviously toxic. My DS2 was 16 months which felt horribly early but is obviously basically OK. It made me more upset than any of the other things at the time! I can feel your pain at this dilemma.

Feeding through such serious surgery and recovery could be tough. If you want to do this you'll need a lot of advice about how to manage this. Feeding on demand and co-sleeping will be out of the question for about six weeks. I'm sure you could manage to stop feeding on demand at the age your DD's at now, though.

50Q - no need to answer but have you got a follow up appt and how soon is it?
The CT scan is needed either way, did you have one before the cystectomy, or just ultrasound?
I am guessing but it sounds like the diagnosis was a bit of a surprise to them - again this does happen, it is not a failing of the clinician or their team - it is something that when it is diagnosed it can be an incidental finding when surgery is for a completely different reason, if that makes sense!
Deffo grab a notepad and carry it with you - jot down all these questions for your next appointment!

Another place for advice/support on possible hysterectomy, the before/after/during etc is the Hysterectomy association's forum

I was told that I would need another appointment in three months so I am waiting to hear when that will be. I have my CT scan on the 7th september so if that shows anything I'm sure I'll be seen sooner. I feel as though I should have been offered the chance to speak to the dr again once the news had sunk in.
I had an ultrasound prior to my laparotomy not a CT scan. I had previous had a large benign cyst removed from that ovary so the consultant has no reason to suspect that this cyst was anything sinister. I think it was a surprise to all concerned! I had an omentectomy (omentum was fine) and they never even bothered to biopsy my left ovary as it looked fine. It's really pulled the rug from under us thinking that everything was ok and that we could go ahead with our plans for a third baby and now.......

Thank you for all your help.