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Recurring ovarian cyst?
About 5 years ago I had a fist-sized complex cyst removed from my right ovary. They had originally thought it was dermoid based on the scan, but it turned out to be a haemorragic cyst with some additional blood vessel stuff going on.
It's possible that it had grown over many years - I'd had irregular bleeding and pain for about 9 years, but never had it taken seriously enough to have a referral to gyn.
This cyst was removed keyhole and they took part of the ovary that was damaged but left the rest. They also did a D&C because my uterus lining was overgrown, probably just as a result of so much irregular bleeding.
Things never fully 'settled' and after a while the symptoms returned, though initially not as badly. Scan showed at couple of persistent corpus luteum cysts, so it seemed like the process was beginning again. Keen to stop me ovulating, they fitted a Mirena. Total nightmare - I bled and cramped for 12 weeks then expelled the thing in the ER in excruciating pain and severe shock.
Shortly after that one of the cysts ruptured, and I spent a few days in hospital in agony with that, so they operated and found that in addition to the ruptured cyst and the remaining blood-filled corpus luteum cyst I also had multiple PCO style cysts, and my ovary was adhered to my bowel and my abdomen wall. So, they did a major clean up. They had previously said that I couldn't possibly have PCO cysts and functional cysts, so that was a surprise.
That was over 3 years ago. Life since then has been way easier. Normal periods with normal period pain, roughly on schedule and without random bleeding in between!
Then about 4 months ago I started to get a bit of spotting between ovulation and my period. My periods have been getting longer and more painful, and I've had many more hormonal symptoms - breast pain and a linea negra. Now I have - for approx 4 weeks - on-off pain in my right lower abdomen. The pain seems to originate about half way across that side, just an inch or so above my groin. Hurts to touch, pain is worse with activity, and radiates right down into the groin / thigh and into my pelvis on that side. Occasionally I'm having more period-y type cramping as well. The pain in my side is occasionally really sharp, but often feels like a weird burning sensation, almost like an itch.
I've been referred for a ultrasound and gyn follow up - I've moved house since my last problems so there's no fast track. I will likely wait 12 weeks for the appointment, if I'm lucky. I can live with this at the moment, but I can't stand the thought of it getting as bad as it was before. I won't know until I see the gyn whether they are the 'wait and see' type.
I kind of want to know how to approach the doctor at the first visit. I saw half a dozen different gyns through my previous treatment - it was a teaching hospital - and they all had totally different opinions. The final one who operated on me was female and said she had no idea how I had been functioning (I barely was by the end) and that I should have been fast-tracked into surgery much sooner. I've learned that the decisions made about your treatment are often a bit arbitrary, and taking a position yourself is not a bad idea.
I've done waiting and seeing before, and it hasn't worked out! Does anyone have experience of recurring cysts which have become less problematic? Have you done 'wait and see' and had it resolve untreated? I don't relish the idea of another surgery, but if it's going to be needed I'd rather not go through several months of escalating pain first.
It's possible that it had grown over many years - I'd had irregular bleeding and pain for about 9 years, but never had it taken seriously enough to have a referral to gyn.
This cyst was removed keyhole and they took part of the ovary that was damaged but left the rest. They also did a D&C because my uterus lining was overgrown, probably just as a result of so much irregular bleeding.
Things never fully 'settled' and after a while the symptoms returned, though initially not as badly. Scan showed at couple of persistent corpus luteum cysts, so it seemed like the process was beginning again. Keen to stop me ovulating, they fitted a Mirena. Total nightmare - I bled and cramped for 12 weeks then expelled the thing in the ER in excruciating pain and severe shock.
Shortly after that one of the cysts ruptured, and I spent a few days in hospital in agony with that, so they operated and found that in addition to the ruptured cyst and the remaining blood-filled corpus luteum cyst I also had multiple PCO style cysts, and my ovary was adhered to my bowel and my abdomen wall. So, they did a major clean up. They had previously said that I couldn't possibly have PCO cysts and functional cysts, so that was a surprise.
That was over 3 years ago. Life since then has been way easier. Normal periods with normal period pain, roughly on schedule and without random bleeding in between!
Then about 4 months ago I started to get a bit of spotting between ovulation and my period. My periods have been getting longer and more painful, and I've had many more hormonal symptoms - breast pain and a linea negra. Now I have - for approx 4 weeks - on-off pain in my right lower abdomen. The pain seems to originate about half way across that side, just an inch or so above my groin. Hurts to touch, pain is worse with activity, and radiates right down into the groin / thigh and into my pelvis on that side. Occasionally I'm having more period-y type cramping as well. The pain in my side is occasionally really sharp, but often feels like a weird burning sensation, almost like an itch.
I've been referred for a ultrasound and gyn follow up - I've moved house since my last problems so there's no fast track. I will likely wait 12 weeks for the appointment, if I'm lucky. I can live with this at the moment, but I can't stand the thought of it getting as bad as it was before. I won't know until I see the gyn whether they are the 'wait and see' type.
I kind of want to know how to approach the doctor at the first visit. I saw half a dozen different gyns through my previous treatment - it was a teaching hospital - and they all had totally different opinions. The final one who operated on me was female and said she had no idea how I had been functioning (I barely was by the end) and that I should have been fast-tracked into surgery much sooner. I've learned that the decisions made about your treatment are often a bit arbitrary, and taking a position yourself is not a bad idea.
I've done waiting and seeing before, and it hasn't worked out! Does anyone have experience of recurring cysts which have become less problematic? Have you done 'wait and see' and had it resolve untreated? I don't relish the idea of another surgery, but if it's going to be needed I'd rather not go through several months of escalating pain first.
i am skinny and losing more weight so doctors don't bother checking me for diabetes and other stuff they say accompany PCOS but after thinking that i had had PCOS i'm now being told it endometriosis and frankly i'm confused cuz none of the treatments work. How do you ladies cope with your love life? are your men supportive or doesn't it affect it?
I sure hope you do find answers. Endometriosis is a condition that causes the same types of symptoms and is hard to dx without surgery. It is unfortunate that some of us are plagued by ovarian cysts and related conditions. I do think genetics has much to do with the struggles we face. Hang in there and keep the faith! Sometimes, time is the best cure! Be easy on yourself and take the time to rest when needed. I hope you feel better soon!
Shelly
Shelly
It's actually good (if unfortunate for you) to hear that I'm not the only one who can't do oral contraceptives. My mum had the same problem, but doctors often look at me like I'm exaggerating when I say it.
I haven't had treatment for the PCOS because I don't fit the profile - I am struggling to keep my weight up rather than down, though at least being skinny (through good luck, I don't work at it!) means I don't get doctors sneering at me about being overweight, which I know many of my friends with gynae problems - unfairly - do.
It's easy to forget how new women's health studies are really. I guess in 10 years time they'll know a lot more than they do now. I'll let you know how I get on. Thanks for the backup!
I haven't had treatment for the PCOS because I don't fit the profile - I am struggling to keep my weight up rather than down, though at least being skinny (through good luck, I don't work at it!) means I don't get doctors sneering at me about being overweight, which I know many of my friends with gynae problems - unfairly - do.
It's easy to forget how new women's health studies are really. I guess in 10 years time they'll know a lot more than they do now. I'll let you know how I get on. Thanks for the backup!
Yes, it is amazing how every hormone is related. I completely understand about the contraceptives. Even before I had my last cyst and ovca dx, I was unable to take oral contraceptives because of the nausea. I am so glad you got an appt. I hope you find something that helps. I am also insulin resistant and I have to cut the carbs in order to stay balanced. The South Beach Diet has helped me, especially since my surgical menopause. I make sure to eat protein every time I eat a carb and it has made a big difference. I have heard great things about Metformin and PCOS. Keep us posted on how you are doing!
Shelly
Shelly
Thanks Shelly, that's a good suggestion actually. My sister is on metformin for PCOS / insulin resistance, and I do have definite blood sugar issues so perhaps I should follow up on that side as well.
I've tried all the major oral contraceptive families but had horrendous nausea on all of them. If you can't keep the damn things down then they don't work! Perhaps approaching it from the insulin side would work better - that hadn't even entered my mind. Glad I posted!
Luckily I got my appointment through and I only have to wake about 2 weeks which is amazing (free health care rocks but often means a long wait).
I've tried all the major oral contraceptive families but had horrendous nausea on all of them. If you can't keep the damn things down then they don't work! Perhaps approaching it from the insulin side would work better - that hadn't even entered my mind. Glad I posted!
Luckily I got my appointment through and I only have to wake about 2 weeks which is amazing (free health care rocks but often means a long wait).
I am so sorry to hear about your cyst pain. It does sound like you have another cyst. Are you being treated for your PCOS? If not, perhaps medication will be an answer instead of surgery. You want to regulate your hormones as much as possible. More recently, doctors are prescribing Metformin (often prescribed for diabetes) and this drug has shown promise with PCOS. I think you should be firm that you are in pain and can't continue to go on in this state. If your gynecologist doesn't see an immediate surgical need, you may want to follow up with an endocrinologist who may help you with more long-term solutions. I hope you feel better soon!
Shelly
Shelly
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