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Author Topic: HRT and ovarian cysts and surgery  (Read 6325 times)

nicky_boo

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HRT and ovarian cysts and surgery
« on: May 07, 2019, 09:29:23 PM »

Dear all,

I started to trust this forum more than I trust medical professionals. I hope this ends well. (I am 46 and peri on HRT - ultrogestan+evorel patches).

I was referred to a private gynae due to intermittent abdominal pain. I suffered from endometriosis in the past and had surgery to remove it years ago. My suspicion was that HRT caused endometriosis to come back. A possible endometrioma (or haemorrhagic follicular cyst) (not too big - 1.6cm) is seen on scan today. The doctor suggested surgery and fitting of mirena coil during surgery and oestrogel to go with it.

I left him thinking that I should have the surgery but now, after reading the forum and some other sites, I am not so sure. I am thinking about trying mirena+oestogel option and monitor pain and the size of cyst rather than going under the knife now. Can endometrioma cause issues in the future? I really don't want to have surgery as my previous surgery for endo made things worse. I had a baby 4 years afterwards which really helped with my endometriosis.

What would you do? Am I crazy doing my own thing rather than following doctor's advice? (My other concern is endometriosis surgery is very specialised and I am not sure the doctor I have seen is specialised enough although he seems very confident)

Any views or experiences are eagerly awaited.

Thanks for reading X
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Hurdity

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Re: HRT and ovarian cysts and surgery
« Reply #1 on: May 09, 2019, 03:32:06 PM »

Hi nicky_boo

You don't seem to have any replies - which means no-one who has experienced your condition has been around recently - hopefully they will soon.

Re the surgery to remove the cyst - what does the specialist say about the cyst if you do nothing ie will it grow if you continue to take HRT? Can it become cancerous? Even if not will it become more painful? Cause more bleeding? I think the answers to these questions and the one you raised, should help you decide whether or not to have it removed or just try the Mirena and see what happens. Can you suggest this option to the specialist too?

The other thing is I presume you have been taking the utrogestan continuously but perhaps orally has not been sufficient to prevent the development of the cyst? It may well be that the Mirena would be better anyway to control the endometriosis?

Sorry I can't be more helpful....

Hurdity x
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CLKD

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Re: HRT and ovarian cysts and surgery
« Reply #2 on: May 09, 2019, 03:50:58 PM »

I would make a list of queries and go back to the Consultant.  There doesn't appear to be any rush and if a patient is mentally prepared, they make a better recovery from surgery.

All surgery is specialist.  Have a chat with your GP and see what experience he/she has about this particular surgeon.  Has anyone from the practice been referred that you could talk to? 

We are all guinea pigs to a certain extent but we need to feel comfortable with our choice of professionals.  What is your gut feeling?
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Krystal

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Re: HRT and ovarian cysts and surgery
« Reply #3 on: May 09, 2019, 07:23:40 PM »

I am 63 now and in 1978 had an ovarian cyst removed and what used to be called a D and C at the same time. The D and C was dilation  and curettage of the womb, in other words the lining of the womb was scraped away because of endometriosis. Some called it a scrape in those days. My periods were very heavy to say the least and I spent many years going back and forth to the GP and hospital for treatment of the endometriosis. I tried all kinds of medication and the only thing which helped was the contraceptive pill. As I got into my mid 30s I could no longer take the pill and the endometriosis returned along with the heavy periods, I had two more D and C one in 1991 and another in 1996 or thereabouts.

 Every month was a nightmare and the pain unbearable that I found myself working out which days were likely to be the worst and using annual leave as odd days off work to overcome this difficulties the endometriosis and period time created. My workplace was not sympathetic at all. Eventually the hospital gave me the option of having a hysterectomy to remove the womb only as I had small fibroids in my womb. Horrified at the thought I persisted with the medication norethisterone(excuse spelling as it is a while ago).

This medication worked for me and each time I was taken off it the endometriosis returned with a vengeance. Surgery was not an option as by this time my mum became ill and there was no-one other than me or hubby to look after her. I stayed on norethisterone continuously for about ten years until my GP said I should be tested to see if I was totally menopausal, by this time I was in my mid 50s. I stopped taking norethisterone when my GP said I was menopausal.

During all this time I was also being treated for IBS and taking medication for that. My life was very stressful during this time and it is often thought stress causes IBS in some people. I put the IBS down to the stress and busy life style.

Fast forward seven years, 2017  I went onto Vagifem to help with vaginal dryness and other symptoms. Within three months of starting this I had abdominal  pains again which felt like period pains and IBS combined. After a visit to the GP and a hospital referral I was diagnosed as having two very large fibroids, one inside the womb and one on the outside.  The consultant told me to stop taking Vagifem immediately. When I asked her if it was possible Vagifem had exasperated the fibroids, she was this was more than likely. I mentioned the hysterectomy option I had been given in the mid 1990s and the consultant said I would have been in the same position as only the womb would have been removed at that time and this time the ovaries affected too.

I was offered the choice of removing the fibroids by mediation or by surgery. She put me on the waiting list for a total abdominal hysterectomy and said I should think about what was best for me.  At my age I felt surgery was the best option for me . I had the hysterectomy in July 2018.

Do not be afraid to go to your doctor with a list of your concerns as CLKD has suggested. Do not rush a decision. You need to decide what is best for you. 
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nicky_boo

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Re: HRT and ovarian cysts and surgery
« Reply #4 on: May 10, 2019, 11:36:36 AM »

Dear Hurdity, Krystal and CLKD,

Thank you very much for your replies. I didn't have any replies for a while and I have only just seen yours.

Krystal, I am sorry that you suffered so much. Endo can be nasty. Interestingly, a friend of mine suggested considering hysterescopy+removal of ovaries today.

On Tuesday, I was against all surgery, now I feel I may even consider removing all female bits inside as I have abdominal pain at the moment. Anybody else who went that extreme? (Krystal I understand you did -  although much later  and it sounds great!) It is 3rd day in my ultrogestan cycle (vaginally) and the pains are similar to stomach cramps when I used to take it by mouth.

I did my research and found a good endo surgeon in my area and asked BUPA for a second opinion authorisation code. This doctor seems to be very popular and I cannot see him for another 3 weeks despite going private. I will discuss all options with him when I see him at the end of May.

Nicky_boo xx
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nicky_boo

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Re: HRT and ovarian cysts and surgery
« Reply #5 on: May 10, 2019, 11:43:34 AM »

Correction: Sorry, I meant hysterectomy - not hysterescopy. Also, Krystal, I believe you still have your ovaries, right?
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Krystal

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Re: HRT and ovarian cysts and surgery
« Reply #6 on: May 12, 2019, 07:22:19 PM »

Nicky boo. No I do not have my ovaries. When I had the hysterectomy last year I had everything removed. When the fibroids were confirmed in December 2017 through ultra sound scan and a hysteroscopy I was told that as I had one fibroid on the outside of my womb (10x8 cm) and a slightly smaller one on the inside of my womb,  a vaginal hysterectomy was impossible. As the fibroids were so big, I would have to have an abdominal incision. I wanted to keep my ovaries and cervix. The consultant said that this would not be possible due to the adhesions of the fibroids. I was shocked and upset to say the least. At this appointment I was put on the NHS Waiting List. Two weeks later I had an MRI Scan and a CAT Scan.  I was also booked for a second hysteroscopy which I attended but the procedure was cancelled and I was sent home. I knew the NHS Waiting List where I live has a 30 week lead time. I pay into Beneden Health and considered having my operation through them most days, but me being me put up with the bleeding and other symptoms. I did ring the hospital at week 20 to find out where I was on the list but no-one could tell me anything constructive. By week 38 well overdue I rang Beneden for help. They required a consultants report so I rang the NHS hospital and the secretary could not have been more apologetic. Within 6 days I had had the operation. By this time I did not care that my womb, ovaries and cervix had been removed. The bleeding, abdominal pain and general discomfort had gone.

Prior to discharge from the hospital I was offered HRT which I declined as I had read on the Hysterectomy Association UK website that in some cases women who have experienced endometriosis in the past may still have a tendency towards developing endometriosis within other parts of the body cavity for up to 12 months after the removal of the ovaries/womb. HRT may be a contributing factor to this but it is not fully researched. I do not take any medication but do take additional vitamins C, B3, B6 and additional minerals zinc and magnesium. I also take calcium to help maintain bone density. This is all in addition to a healthy diet and exercise.

Nicky Boo as you are in your mid 40s it is your decision as to what you feel is the right course of for you. I was offered a hysterectomy to remove the womb only when I was about your age, thus keeping my ovaries, I declined the operation.. When I had my appointment in December 2017 I mentioned my gynae history and the consultant said that the removal of the womb 20 years earlier would not have prevented the removal of the ovaries at this time as my ovaries were affected by the fibriods. It is a difficult decision, but by going private you do get more consultation time and a longer recovery time in hospital. The NHS tend to discharge you after 48 hours providing you have no post op issues.

Endometriosis is no fun. Since my operation my overall health has improved, I feel fitter and more energetic and would say intimate relations have improved. There is still love and romance after a hysterectomy providing you do this at your pace with an understanding partner and GP.

Wishing you all the very best. Krystal xxxxx 

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Woodlands

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Re: HRT and ovarian cysts and surgery
« Reply #7 on: May 12, 2019, 10:07:54 PM »

Hi there.
I have ovarian cysts on both ovaries and have had for about three years. I'm monitored by scan 6 monthly and I have in the past had CA125 blood tests for cancer.... All OK, they are the ovarian cancer marker bloods.
I'm on my second mirena so thank goodness no periods but at 56 my ovaries are still active... Hence the cysts both sides. I have in the past had a camera in to check for endometriosis but all was OK.
I have a 5cm external uterine fibroid too and a retrovert uterus..... Me.... I'm fine Ian happy with scans and no surgery.... Cysts 13mm on side and 15 mm the other
Do only what you want and feel is right for you
Woodlands xx
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nicky_boo

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Re: HRT and ovarian cysts and surgery
« Reply #8 on: June 01, 2019, 09:22:15 PM »

Dear Krystal and Woodlands,

Thank you very much for your messages. I have only just seen them. I have seen another doctor for a second opinion. It looks like HRT has flared up endometriosis. He is not so concerned about the cyst though. He suggested reducing the dose and delivery method of oestrogen and see how I get on. he will scan again in 6 weeks.

Krystal, it sounds like surgery really helped you. This new doctor I have seen gave me more confidence in his judgement. He is an expert on endo. I am a little frustrated with the time I spent with the other doctor - who did not examine me or scan me himself. Woodlands message tells me one can live with cysts. I will wait and see.

I may open a new post to explain my HRT journey and endometriosis. It may help someone else. GPs were too quick to prescribe oestrogen liberally - even though I highlighted my condition. I feel like a trial and error guinea pig. They should have been more cautious.

Kind Regars,
Nicky_boo
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