I don't think I can do it a third time

[samambreen]

I had a large (17cm) cyst removed from my left ovary in March of this year. I had for many months experienced medium to heavy pelvic pain and felt nauseous and bloated. My weight went down to seven and a half stone and I felt weak and lethargic and looked about 4 months pregnant. After the cyst was removed I was reassured that the entire cyst had been removed and that I should experience no further problems. On the 2nd of October this year I was diagnosed with a large (14cm) peritoneal pseudocyst and advised this was due to adhesions and as a precautionary measure, they would also think about removing my left ovary. All the while, they kept saying there was a chance they'd need to perform a laparotomy as they did not know what to expect. Four days ago, I had a second laparoscopy but afterwards I was told that in fact, there had been a little bit of the wall of the cyst remaining, therefore the previous cyst has returned. They'd also left the ovary intact. I'm 26 and it has taken up the best part of my year. I don't have children yet and worry about the impact this is all having on my reproductive health. I have been booked in for a further scan in three months time to track the progress of the procedure but I'm absolutely petrified.

[kspack]

I am not a doctor, but I have some medical knowledge and have been going through workups and treatment for infertility and I just had laparoscopy to remove ovarian cysts.  It seems to me that the doctor performed the first surgery with as much caution as possible, so as to preserve the ovary.  It sounds like he performed standard of care for your condition.  It would have been worse if he had opened you all the way up in a laparotomy to "make sure there was nothing left or removed the ovary if need be", because that is much more invasive and causes much more scarring and adhesions than the laparoscopy.  It is good that the doctor was conservative in opening you up the least amount possible to get the job done and that he was able to preserve the ovary.  Are you seeing a reproductive endocrinologist?  When you are ready to conceive, you should bypass a regular obgyn and go to a RE, as they are the experts in treating infertility.  I would imagine you could see one now to best preserve your fertility, as well.  Good luck!

[Silvara]

I do think you should file a complaint so the surgeon is brought up on a morbidity and mortality review at the very least.  It is not at all acceptable that he left some of the cyst behind.  If there was any doubt, he should have opened up your abdomen so he could make sure there was nothing left or removed the ovary if need be.

I don't know the procedures for this since it's NHS, but I know it can be done. Just think of all the money he cost the NHS because you had to have another Op when he could have done it right the first time.  Perhaps you can get your GP to send you to a different specialist for follow up appointments and scans.  That surgeon, NN, sounds very dodgey to me.

[samambreen]

Hi babypooh and Silvara,

Well, they kept referring to the first one as a 'simple cyst', mucinous, could barely see the ovary and so they'd already prepared me for possible removal of the ovary the first time. When they didn't have to take it out, I was overjoyed. I didn't have any follow up appointments, which I thought was a bit odd, and they sent me on my way. The only reason they discovered it the second time is because I started experiencing similar discomfort in September. I think there is a bit of malpractice here cos they started out saying the second one could have been my body's reaction to the previous surgery  - adhesions - and seemed pretty certain they would be removing the ovary. As I was coming round from the anaesthetic - to which I then had a bad reaction - they advised they'd left the ovary behind as it seemed it was the same cyst growing back from the little bit of wall left behind.

I have to say, the surgeon I was under seemed a little overly concerned and it felt like either he had to be accompanied by another surgeon every time we spoke or that he became jumpy if there was a doctor speaking to me without him present. Whilst I was drifting in and out of the anaesthetic - I was hooked up to oxygen for what felt like 24 hours - I'm pretty sure I heard a bunch of nurses discussing me whilst swapping over in the morning and they said something like "oh yes, this patient and the other one that can't stop throwing up are under NN". Those are my surgeon's initials.

When I was finally diagnosed with the return of the cyst on the 2nd of October, the three consultants scanning me kept whispering to each other and looking worried. They gave me the impression it should be down as an urgent case and they'd need to operate asap (3-4 weeks on the NHS). I got the appointment over two months later. Due to the anxiety of having to go through all this again I became very anxious and was prescribed Diazepam by my GP. I lost my job.

I need to hold someone accountable I think.

[Silvara]

I'm concerned that they left a portion of the cyst behind in your first surgery.  That smacks of malpractice to me.  As long as they removed the entire cyst this time, you should be OK.  Like babypooh said, you'll still be able to conceive with just one ovary functioning.

What kind of cyst did you have for the first surgery?  Did they send it to pathology and tell you what came back in the report?

[babypooh]

Even if you only had one working ovary, you'll have plenty of chances to get pregnant in the future.  Keep a close eye on those recurring cysts though.  Have they diagnosed you with PCOS?  That would make it harder to conceive, but not impossible, but if you do have it, you need to prepare your body with the right treatments so that your body can carry a baby to full term. You've been through a lot. I'm sorry you had to experience that. Let us know how it turns out, but try not to worry too much, that makes everything worse.  Hope you don't need to go through anymore surgeries.