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scared 22 year old, getting ovary and fallopian tube removed for dermoid
Hi there, I am 22 years old and I'm from Ireland.
I have had trouble since I was 17 with terrible abdominal cramps, usually leaving me unable to stand and sweating profusely from the pain. My GP had always believed I had IBS so I was basically told to go away and make changes in my diet, still no use.
This past year I have had more symptoms, problems with my bowel including blood and mucus, blood in my urine (yet no infection), generally urinary problems including leaking and needing to go more often. And the abdominal cramps have remained, usually getting worse before my period buy they can flare up at any time really.
I also have a constant dull tender ache right down low, basically on my pubic bone.
Final straw came when I nearly collapsed in pain in my dads bathroom one morning, couldn't stand, thought my appendix had burst. Went to my Gp who finally referred me last week to a private hospital. I had an ultrasound of my tummy last Monday which showed a suspected cyst on my left ovary.
So I was referred to a gynaecologist who did an internal ultrasound and showed me the mass on my ovary. She reckons it is a dermoid cyst and has said that I need to get the cyst and my ovary out too. I'm pretty upset about this as I worry the same thing could happen to my other ovary and then I'm left with nothing :-S
I am to have a CT/MRI scan this friday and then I've to go back to gynae doctor to organise surgery.
The gynaecologist did say that she doesn't reckon its cancer so I'm 'not to worry'. Yet since she mentioned it I've done nothing but worry!
Is taking away an ovary really necessary for these types of cyst??
Please help,sorry for the rambling!
I have had trouble since I was 17 with terrible abdominal cramps, usually leaving me unable to stand and sweating profusely from the pain. My GP had always believed I had IBS so I was basically told to go away and make changes in my diet, still no use.
This past year I have had more symptoms, problems with my bowel including blood and mucus, blood in my urine (yet no infection), generally urinary problems including leaking and needing to go more often. And the abdominal cramps have remained, usually getting worse before my period buy they can flare up at any time really.
I also have a constant dull tender ache right down low, basically on my pubic bone.
Final straw came when I nearly collapsed in pain in my dads bathroom one morning, couldn't stand, thought my appendix had burst. Went to my Gp who finally referred me last week to a private hospital. I had an ultrasound of my tummy last Monday which showed a suspected cyst on my left ovary.
So I was referred to a gynaecologist who did an internal ultrasound and showed me the mass on my ovary. She reckons it is a dermoid cyst and has said that I need to get the cyst and my ovary out too. I'm pretty upset about this as I worry the same thing could happen to my other ovary and then I'm left with nothing :-S
I am to have a CT/MRI scan this friday and then I've to go back to gynae doctor to organise surgery.
The gynaecologist did say that she doesn't reckon its cancer so I'm 'not to worry'. Yet since she mentioned it I've done nothing but worry!
Is taking away an ovary really necessary for these types of cyst??
Please help,sorry for the rambling!
Just wanted to comment on my experience. I had my right ovary and right fallopian tube removed about 5 months ago due to two endometrial cysts. I also had endometriosis and some adhesions that the surgeon took care of. Thankfully, my surgeon was able to perform the surgery laprascopically. I had little to no pain after the surgery. Was sore and sick from the anesthesia, but wasn’t in pain. Felt good within a couple of days. I’ve had no side effects from having my ovary removed. Everything is exactly as it was before the surgery. Hopefully, your surgery can be done laprascopically and you’ll have a quick and easy recovery. I was very scared before the surgery since this was my very first surgery, but it turned out to be a breeze. I was lucky to have such a wonderful and talented surgeon. Good luck to you!
Your recovery sounds like a nightmare! No offence intended. Though I'm glad you're through the worst of it.
Well so far you have gave me 20x more info than my gyn, so thanks for that! I didn't even realise hair loss could be a possible temporary outcome from the surgery. Just had my mri scan today, so next week I meet with her for results. And yes she did do a blood test, I imagine I will find out results of that also next week.
Yea I do need to stop mentioning cancer ( this time doesn't count Haha), think cause my great grandmother had it, its in my mind. But really I know that that is a fair few generations back so I neednt worry.
Don't worry about novel length replies lol its good to hear other peoples experiences rather than just reading a brief overview from the nhs page!!
Well so far you have gave me 20x more info than my gyn, so thanks for that! I didn't even realise hair loss could be a possible temporary outcome from the surgery. Just had my mri scan today, so next week I meet with her for results. And yes she did do a blood test, I imagine I will find out results of that also next week.
Yea I do need to stop mentioning cancer ( this time doesn't count Haha), think cause my great grandmother had it, its in my mind. But really I know that that is a fair few generations back so I neednt worry.
Don't worry about novel length replies lol its good to hear other peoples experiences rather than just reading a brief overview from the nhs page!!
My recovery was long and rough. I had two long incisions about as long as they could be vertical and horizontal (a normal laparotomy would be 3-4 times smaller than what I had), 2 surgeries 5 days apart. All because of the huge size of my cyst. I also haemorrhaged after the first surgery and even after the blood transfusions I only had 2/3 of the blood I was supposed to have. Took about 2 months for my body to make up for that, 2 months to get more or less pain free and about 3 months to start feeling normal again - so my recovery was not typical.
Most people will need 6 weeks to recover from laparotomy, pain lasting 4-6 weeks or 2-3 weeks for laparoscopy, depending how bad the gas and pain affects you.
As for loosing the ovary.. I had some vaginal dryness for a couple of months, nothing ky couldnt cure.. My hair was falling out for about 3 months, but it stopped again, could also be caused by quitting the p pills before surgery. My period has been messed up since though, trying p pills now and they dont seem to make things better yet either. I havent had the mood swings other people report having the first weeks after the surgery, but it could be due to my blood levels. The surgery itself stresses out your body and will affect your hormones/periods, but I think most women return to normal after a couple of cycles.
Long term I have tried to sort through information from around the internet. Pregnancy should be no problem, fertility might be reduced by a few % at most. No need for hormone supplements, which have been proven to increase the risk of cancer if used long term. On the down side, there seems to be some evidence of a higher risk of dementia and parkinsons, menopause might set in a few years earlier, Im assuming the ovary would get exhausted a bit faster than it should. I dont recall if premature ovarian failure (menopause before the age of 40) was related to having just one ovary or if you had surgery on the ovary (cysterectomy, partial removal etc). Being a twin oddly increases the risk of premature failure as well, so that is bad news for me either way! Some of the information appears to be a bit vague or based on small studies, so I dont know what to think of it. Regardless, quality of life should be better without a sick ovary causing you pain and threatening to twist..
A twisted ovary is supposed to be very very painful and collapsing or fainting is fairly common. Cysts would often press on the bladder causing you to need the toilet more frequently. My cyst did affect my bowels (and stomach, effectively like a gastric band, although I didnt ask the surgeon to confirm) but not my bladder, it didnt seem to affect my lower abdomen as much. I have had irregular bowel movement all my life except when there wasnt room for me to be constipated due to the cyst. So it can affect these things, but may not be the only reason for your problems.
Dont know what she meant about the co-incidental finding. Maybe she is very fond of transvaginal scans, but it is possible to evaluate the ovaries with pelvic scans as well, you just need a full bladder to lift the wall of the abdomen for a clear view. Maybe she thought your bowels could have justified a scan before you got the cyst, so the cyst would have gone undetected.
And there you go mentioning cancer again! Have they done blood tests yet? They normally test for tumour markers such as Ca125, but still, your age and the type of cyst suggests it should be benign.
Most people will need 6 weeks to recover from laparotomy, pain lasting 4-6 weeks or 2-3 weeks for laparoscopy, depending how bad the gas and pain affects you.
As for loosing the ovary.. I had some vaginal dryness for a couple of months, nothing ky couldnt cure.. My hair was falling out for about 3 months, but it stopped again, could also be caused by quitting the p pills before surgery. My period has been messed up since though, trying p pills now and they dont seem to make things better yet either. I havent had the mood swings other people report having the first weeks after the surgery, but it could be due to my blood levels. The surgery itself stresses out your body and will affect your hormones/periods, but I think most women return to normal after a couple of cycles.
Long term I have tried to sort through information from around the internet. Pregnancy should be no problem, fertility might be reduced by a few % at most. No need for hormone supplements, which have been proven to increase the risk of cancer if used long term. On the down side, there seems to be some evidence of a higher risk of dementia and parkinsons, menopause might set in a few years earlier, Im assuming the ovary would get exhausted a bit faster than it should. I dont recall if premature ovarian failure (menopause before the age of 40) was related to having just one ovary or if you had surgery on the ovary (cysterectomy, partial removal etc). Being a twin oddly increases the risk of premature failure as well, so that is bad news for me either way! Some of the information appears to be a bit vague or based on small studies, so I dont know what to think of it. Regardless, quality of life should be better without a sick ovary causing you pain and threatening to twist..
A twisted ovary is supposed to be very very painful and collapsing or fainting is fairly common. Cysts would often press on the bladder causing you to need the toilet more frequently. My cyst did affect my bowels (and stomach, effectively like a gastric band, although I didnt ask the surgeon to confirm) but not my bladder, it didnt seem to affect my lower abdomen as much. I have had irregular bowel movement all my life except when there wasnt room for me to be constipated due to the cyst. So it can affect these things, but may not be the only reason for your problems.
Dont know what she meant about the co-incidental finding. Maybe she is very fond of transvaginal scans, but it is possible to evaluate the ovaries with pelvic scans as well, you just need a full bladder to lift the wall of the abdomen for a clear view. Maybe she thought your bowels could have justified a scan before you got the cyst, so the cyst would have gone undetected.
And there you go mentioning cancer again! Have they done blood tests yet? They normally test for tumour markers such as Ca125, but still, your age and the type of cyst suggests it should be benign.
Thanks for the reply! It's good to talk to someone in a familiar situation.
How did you find the recovery after getting your ovary removed?
What kind of worries me is that the gynae said that she believes the finding of the dermoid was completely co-incidental from the scan?? She believes the severe pain I had which caused me to near collapse was because it had twisted at one point, just like you were saying. Yet all my other symptoms.. to do with bowel/urinary/general tenderness are not to do with it??
*sigh* so now I've to get a sigmoidoscopy also.
Yet I have read that these dermoids can cause these symptoms such as gloating and what not, kinda along the same lines of symptoms as ovarian cancer. Really hope once this is taken out all the nonsense will stop!
How did you find the recovery after getting your ovary removed?
What kind of worries me is that the gynae said that she believes the finding of the dermoid was completely co-incidental from the scan?? She believes the severe pain I had which caused me to near collapse was because it had twisted at one point, just like you were saying. Yet all my other symptoms.. to do with bowel/urinary/general tenderness are not to do with it??
*sigh* so now I've to get a sigmoidoscopy also.
Yet I have read that these dermoids can cause these symptoms such as gloating and what not, kinda along the same lines of symptoms as ovarian cancer. Really hope once this is taken out all the nonsense will stop!
Sorry to hear about your problems, your GP doesnt sound brilliant.
Small functional cysts are a normal part of the monthly cycle, larger non functional cysts occur when things mess up. Cysts are most common in young women and dermoid cysts are most common for your age group. They usually contain fluid and solid tissue such as hair, teeth, fat etc, anything an egg would be able to produce. 95% of all cysts are benign, dermoid I think is close to 99% benign and the general risk of cancer is smaller in young women, so the odds are very good. Dont worry too much!
You will need to chat the surgeon sometime before your surgery, make sure to talk about preserving the ovary. It is often possible to save some or all of the ovary (cysterectomy). Sometimes the cyst(s) mess up the ovary completely making it practically impossible to save or the cyst can make the ovary twist around its blood supply and choke the ovary, if that happens the ovary dies if it isnt untwisted quickly enough and needs to be removed. It is impossible to say if it can be saved or not until the surgeon actually sees it, so if your surgeon doesnt think it is worth trying/possible to maybe save part of the ovary you might want to look for second opinions elsewhere.
I lost my left ovary 6 months ago and wish it would have been possible to save some of it in case I ever needed it, so I would definitely recommend to fight for your ovary! Prepare yourself for bad news though so you dont get too disappointed if it cant be saved.
Small functional cysts are a normal part of the monthly cycle, larger non functional cysts occur when things mess up. Cysts are most common in young women and dermoid cysts are most common for your age group. They usually contain fluid and solid tissue such as hair, teeth, fat etc, anything an egg would be able to produce. 95% of all cysts are benign, dermoid I think is close to 99% benign and the general risk of cancer is smaller in young women, so the odds are very good. Dont worry too much!
You will need to chat the surgeon sometime before your surgery, make sure to talk about preserving the ovary. It is often possible to save some or all of the ovary (cysterectomy). Sometimes the cyst(s) mess up the ovary completely making it practically impossible to save or the cyst can make the ovary twist around its blood supply and choke the ovary, if that happens the ovary dies if it isnt untwisted quickly enough and needs to be removed. It is impossible to say if it can be saved or not until the surgeon actually sees it, so if your surgeon doesnt think it is worth trying/possible to maybe save part of the ovary you might want to look for second opinions elsewhere.
I lost my left ovary 6 months ago and wish it would have been possible to save some of it in case I ever needed it, so I would definitely recommend to fight for your ovary! Prepare yourself for bad news though so you dont get too disappointed if it cant be saved.
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