Last Wednesday I had my third ultrasound (first 5 years ago showed nothing, one in May showed a cyst in the uterus) and the consultant found two cysts, one on each ovary.
I was told my chances of conceiving were very low as one ovary was completely covered and the other only a small bit was visible. The consultant has given me 3 choices for treatment. Whilst I know you can’t tell me what one is best, I’m hoping you can tell me your experience or other suggestions you/your consultants have come up with.
For context I’m 25, I’m healthy, I don’t smoke or drink and I believe I have a very good diet- though i’ll be looking to change that through my treatment. My Partner and I would like kids in the next 2-3 years depending on life. We wish to conceive as naturally as possible and hope that I can also carry.
Option one: go on the pill for 3 months, take a week off to bleed and see consultant to assess the affects on the cysts/pain management.
Option two: take the pill as normal, see how this works for pain management and assess affects on the cysts/pain management
Option three: go in to the early menopause for an agreed amount of time using medication. Be forced out of it, asses affects on cysts, pain not expected through menopause.
Any and all advice appreciated.
TIA x
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GeorgiaMC
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They wanted to do an ‘emergency lap’ on Wednesday but I went on my own so they said they wouldn’t do one, possible have it next time. I don’t remember if they said about removing the cysts but I know the one covering my ovary completely may have to removed if it cannot be saved. The sizes were 9.4x7.6cm and 7.5x4.6cm! Estimated weights (not sure if this is correct though as I saw the consultant scribble it down and he didn’t actually say, but it said 8lb10oz!!
I’m thinking of the 3 month one too, menopause seems to risky
Mine was 14x10x7, also warned about removing the ovary as they couldn't see on the ct scan what the cyst was doing, in the end it was a partial oophorectomy after they drained the cyst. They may tell you before a laprascopy that it then might have turn into open surgery, as it can only be done keyhole if the cyst is under a certain size and is filled with fluid. If its a fleshy mass then they have to essentially do a "mini c-section" style to get it out. I was in hospital 6 days waiting for the op, that then revealed the endo.
You had to stay for 6 nights? That’s my worst nightmare. I’d hate being alone and probably wouldn’t sleep much at all. May I ask why you had to wait? I think i’ll Need to prepare an overnight bag + some spare bits 😳😰
I was admitted to a+e with suspected kidney infection/stones. I was a couple of days in the assessment unit until they found the cyst trying to eat my ovary then the rest in the gynaecology ward. Assessment unit was rough as it was so busy but gyne was great, had a room to myself. Surgery was due on Sat then bumped to Sunday as emergencies had came in. Had another night in after the surgery as I freaked out when waking up and they had to give me ketamine 😂 had no idea I had endo until I woke up, so that's been fun!
The menopause option means that once they've removed the cysts, they definitely won't grow back during the period your hormones are shut down. It buys you some time. I imagine there is a larger chance of the cysts growing back while you're on the pill, but they might not. Obviously it's better to be on the pill than to be in menopause all other things being equal, so if the cysts don't grow back while you're on the pill, that might be the better option. Therefore trying the pill first but monitoring it closely makes sense to me (either option 1 or 2). I don't know why bleeding is an option, why not just run them together?
With the menopause option, there is an extremely small risk that your ovaries won't start working again. At the age of 25, this is probably an even smaller risk than for someone in their mid 30s. I was on Prostap for 9 months and my ovaries started working again after a couple of months of being off it. I was pain free after a few months of being on it but the adjustment curve is steep and you will see from this forum that a lot of people struggle with the side effects.
Also, I had a cyst that was roughly 8.5 cm x 6.5 cm, and they didn't need to remove the ovary, and managed to do it all laparoscopically
I hope you're at a BSGE accredited centre. Very best wishes for it all and I hope you feel comfortable and informed with whatever decision is made. xx
BSGE is the British Society for Gynaecological Endoscopy. Basically certain (NHS) hospitals around the country specialise in endometriosis and are accredited by the BSGE as centres for excellence in endometriosis.
I believe you do have the right to ask to be referred to your nearest BSGE centre. I am lucky enough to live near one so my nearest NHS treatment option was there anyway. Your local gynaecologist might be based at one, too. But if not, it's something to at least consider further and maybe ask about. Personally, I feel that the most important thing with surgery is who is doing it, and it's best to be operated on by someone who is a specialist in this area and not a general gynaecology surgeon. You can only have so many surgeries so you want each one to be as effective as possible at reducing pain and preserving your fertility.
My nearest is about 12 miles away, so that’s really close considering I’m in a village! Thank you for that. I will speak with my GO/consultant (whoever I see first basically) to discuss this. It’s a teaching hospital but we’ve all got to learn somewhere, right?
That sounds positive! Teaching hospitals usually have more to offer for tertiary care / more specialised areas, which endometriosis can fall into, so it's a good thing if it is a teaching hospital.
No, best to raise it with the consultant at the hospital, whose care you're already under. There could be a longer waiting time to be referred someone else, it may not be necessary, etc, but you could at least discuss the fact that you are wondering if it is an option to be seen at a BSGE centre by an endometriosis specialist. You could also do some research into which endo specialists are at the teaching hospital and ask about them specifically. Best also to research the name of the consultant you are going to see, they could be a renowned expert in endo excision themselves of course! Hope this helps.
If I were you, I would take Visanne (or another pill that was proven to be able to shrink cyst) for at least 6 months and then see what happens.
I am going to be honest with you because I am 24 and wanting to have children in 5 years. You will most likely need surgery because even if cysts shrink, if there are adhesions going on (which even a specialist has a hard time finding via ultrasound or other imaging methods) the chance of conceiving and carrying to term are much lower because of anatomical alterations. So I would go on Visanne and see what happens and in the meantime look for an experienced Nancy Nook surgeon with extremely low recurrence rates to turn to in 1-2 years for surgery, if needed.
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