Don't even know if this is the right site... - Endometriosis UK

Endometriosis UK

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Don't even know if this is the right site but......

Moggie profile image
6 Replies

thought I would ask you guys anyway so here goes.

I suffer with hypothyroidism and also cysts on my ovaries (definite link between the two) . The right hand ovary has been diagnosed for a while and the op book for 20th Jan. Unfortunately they cannot do a laparoscopy as my cyst is measuring 12cm x 11cm x 9cm and they are going to take the ovary as well (aged 54) BUT had a ultrasound on Tuesday only to discover I now have 2 smaller cysts on my left ovary so my question is:

Will they take both ovaries now, would they want to still only take one (which I think is pointless) or would they suggest a hysterectomy?

Thanks for reading.

Moggie x

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Moggie
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LittleMissManx profile image
LittleMissManxModerator

Hi Moggie

Have you discussed with your consultant the possibility of having both ovaries removed during the same op? How do you personally feel about him taking both together?

I agree it makes sense because if he only removes one then you may have to undergo further surgery down the line. When you say they can't do a laparoscopy does this mean you are facing a laparotomy i.e open surgery?

From my own experience at trying to beat endo I had one ovary removed <prior to a hysterectomy which I didn't know at the time I'd need> then two years later had the actual hyst followed a few months later by having the final ovary removed. Even the anaesthetist recognised me I was in the same hospital that often!

So I fully understand why you are considering losing both ovaries at the same time. It would be kinder on your body not to have to go though more general anaesthetic than necessary and help prevent further problems with growing cysts.

Good luck for your op and hope you get the ovary issue resolved in January!

Caroline, x

Moggie profile image
Moggie in reply to LittleMissManx

Thanks so much for your reply.

Unfortunately I only found out on Tuesday about the other ovary and my gynae is now on annual leave so I cant ask her (she is lovely by the way) and she wont be back until after the new year.

Phoned her secretary this morning (she's lovely too) and she is going to ask another consultant what he/she would do in this instance but it has taken me almost a year to get to the op stage due to heart issues caused by my thyroid conditions and the meds I take so having to cancel this one would definitely be a blow.

Do I actually need my shrivelled, no longer working ovaries even?

Sorry to hear you have had such a rough time of it - it say's something when the anaesthetist recognises you lol, and I hope everything is now sorted.

Thanks again for the info.

Moggie x

Impatient profile image
Impatient

It is your decision. If the other two cysts are not causing you any bother you might want to leave them alone. Or ask the surgeon to remove them but do all possible to save the ovary.

I had one of mine tken out with an angry cyst - the other ovary had an 8cm cyst attached with was also stuck in the POD, and all of that was removed and detached from the ovary- thus saving my one remaining ovary.

And better still - avoided th need for me to hve HRT for years.

However.... given your age and that menopause would naturally be occuring somewhere around the age of 55, your surgeon may be of the view that it is better to be rid of both and that you do commence HRT if your menopause symptoms are too severe.

It is less of a health risk having them both out at 54, than the same procedure on someone a lot younger. The reason for keeping one ovary if at all possible- is that it does a decent job of looking after the health or your heart and of your bones - so certainly worth begging to keep one if at all possible.

You might want to compromise and tell the surgeon that if they cannot drain or remove the cysts attached to the healthier ovary successfully that you want them to leave it as it is. Just whip out the monster cyst and ovary from the other side.

Then see how you get on with the remaining ovary and cysts.

They may not continue growing- the cysts might disappear on their own anyway, or they might burst. OUCH !!

If you do want them to save one ovary at all costs barring obviously any signs of cancer or other life threatening conditions- then make note of that on your operation consent form. You can get by very well with just one working ovary.

Moggie profile image
Moggie in reply to Impatient

Thanks for this reply - very informative.

I went through the menopause at 42 due to my thyroid condition and, on doing lots of research, have found that my thyroid condition can cause cysts but they SHOULD stop when you are on adequate thyroid replacement and that's when it gets tricky as GP's will look at my bloods and tell me that I am on adequate thyroid replacement from my blood results as they take no notice of remaining symptoms no matter how hard you fight, and boy have I fought, so am now self medicating with (I think) a far superior thyroid replacement drug than the NHS can give me. In other words I doubt if my new cysts will stop growing which will leave me having to go through the same operation again in a year or so.

To make matters worse when I spoke to the gynae's assistant she totally rejected any connection between thyroid issues and ovarian cysts - even though it is well documented.

So, if I can ask another question please (hope you don't mind) which is - if I have already been through the menopause without any problems at all, bone and heart scans seem fine, is there any sense in trying to keep any of my ovaries and risk a further operation.

Thank you again for your time.

Moggie x

Impatient profile image
Impatient

Yes it is preferable to keep one even if it is no longer ovulating - doesn't mean it is entirely redundant - after all it is still active enough to develop cysts so somethings are still working there.

But you should discuss with your Doc the alternative - which would be to have HRT and how that would impact on the thyroid issues.

It will be your decision- and is an irreversable one as well, so not to be taken without doing your own homework as best you can on the meds you are already having to take and also on how they would react to an HRT supply being taken every day too.

Might be worth posting a message on the Hystersisters website as well, because they have sooo many ladies as members and there's bound to be a few that have faced what you are facing and also coping with thyroid issues at the same time.

Even if they don't have endo too it will still be worth sounding out their experiences to perhaps help you come to a decision.

Moggie profile image
Moggie in reply to Impatient

Thank you so much for your very informative reply and I will definitely be doing some homework on the issue.

Will also look at the website you mentioned.

Have a good Christmas.

Moggie x

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