I was just looking for some advice or someone who has maybe gone through the same or similar thing i am.
I am 30 years old, when i was 18 i started getting terrible pains in the left pelvic area, went through a couple years of this pain and i was finally referred to get an ultra sound. There was a cyst found in my left ovary which was 3cm by 3cm, and i was told this wasn't big enough to worry about or to be causing the pain i was in. I was told they would just give me check up ultra sounds to keep an eye on the cyst. The pain got so severe i was rushed to hospital again, then endometriosis was mentioned, so i was then admitted to get a laparoscopy. After the operation there was no endometriosis found and i was told to go back see my GP.
I did and they mentioned putting me on the pill to see if this would help the pain.
I had been on the pill for a few months and the pain had settled, i would get pain when i was due my period, just like bad cramp but more so on the left side, a few days in to my period the pain would ease.
I then had to come off the pill at the age of 27 as i was diagnosed with migraine, as i was told taking the combined pill can make migraine worse. I tried other forms of contraception but nothing else suited.
About 1 and a half years being off the pill the left pelvic pain started to give me problems again, always seems to start the week before I'm due a period, I also found in this time when i went to the toilet first thing in the morning, whether it be to empty my bladder or bowel, afterwords the pain on the left side would be a lot worse. When my period starts the first couple days i have some painful cramps but into the third day it eases.
By this time i was 29 and i was lucky i now had private health care, and was recommended a doctor by a friend. I was sent for an ultra sound and he said there was no sign of the cyst but also my ovary wasn't very clear on the ultra sound but nothing to be concerned about. I was back to chat about the ultra sound, he didn't want to mess about and wanted me in for a laparoscopy to check for endometriosis, just in case it had been missed when i got the last laparoscopy.
In Dec 2013 i went in for the procedure and the results that came back was my left ovary was in bits, the cyst i had all they years ago caused my ovary to twist and the cyst finally ruptured causing my ovary to be in bits, but not knowing when this actually happened through this period of time. The surgeon done his best to pack the bits of dead ovary left down to the side, some bits had been stuck to my bowel.
I went back for a check up 6 weeks after the surgery, and chatted more about it, i asked if i would need a bigger operation to remove the dead bits of ovary, but the doctor said it will do no harm to leave it where it is, i also asked if the pain still continued what would happen, he said if i did want to get it all taken out and it would be the tube as well he can't guarantee it would stop the pain. One option was to try an injection first which shuts down the ovary so i don't get a period and see if that stops the pain.
I've given it three months since the procedure and I'm still getting really bad pain the same as before.
I was looking for any advice or if anyone has been through the same thing and what they done. I've read up on girls who have had to have their ovary removed because a cysts has become too large but haven't found anyone yet that's had the same problem as I've had.
If i decide to go for the operation to remove the dead ovary and the tube could there be complications afterwards? I know the doctor can't guarantee it will stop the pain but if i don't try it i will never know, and would have to live with being in pain for over a week every month. All I'm able to take for pain relief is paracetamol and ibuprofen, but they don't help. Is it a bad idea having the bits of ovary and the tube removed at this age?
When i get the pain i feel bloated and get wind, Is this something that happens when having pain in that area, could this be connected?
If anyone has any advice i would really appreciate it. Thank you
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Dee82
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Hi, I can't help but think your issues may be more to do with your bowel than your ovary esp as your pain is on your left side.. Have you had any tests by a gastroenterologist? I have an ovarian cyst at the moment around 6.x6cm as well as pain in the lower bowel, sometimes its confusing as to where the actual pain is coming from. I have also been diagnosed with a mild fom of diverticulitis. You shouldn't be having the pain you mentioned. Sometimes two of three things in the pelvis are happening at the same time which confuses things even more. My daughter recently had an ovarian cyst over 15cm which was found when she had an ultrasound for her bladder issues. This had probably been growing for years and had no symptoms whatsoever. Keep investigating but my gut feeling, excuse the pun, is bowel related rather than ovarian. Let us know how you get on.
Hi, I have never had anything like that, The only time i have the feeling of being bloated and having wind is the time leading up to starting my period, it's the same every month. Just find it strange for the length of time i was on the pill and i was fine, but when i had stopped taking it the pain was back and just as bad. It has been in my head could there have been more damage done inside when the cyst ruptured, and the fact some of my ovary was stuck to my bowel which the surgeon had to peel off and he packed it down to the side as he couldn't remove it as i was only having a laparoscopy and that kind of procedure needs to be open surgery and he didn't find out how bad things were till he was in investigating, he wanted to speak to me about it instead of going ahead and doing a bigger operation.
I'm back to see my gynecologist at the end of the month to let him know how i have been doing since the procedure in Dec last year, Is it worth mentioning or asking to see a gastroenterologist? It's just getting me down now, having this horrible pain every month and feeling no one can help me.
I would deffinately insist on any dead tissue being removed,first because i wouldnt like to be aware it was there wondering if it was going to turn toxic or gangreen,and second its amazing that they dont seem to mind leaving dead tissue behind in the first place.I would get advice for certain.That is so bad!!
Yes you need to rule out everything, you have nothing to lose, if you now have private insurance I suggest you go fo it. You should not been suffering like you have been for all this time.
I'm so sorry to hear your in so much pain, If it helps, I think I have a similar situtation not exactly , but I am waiting for an operation to remove my left tube, scar tissue, and whatever else needs doing that they find..eek
I have the same unbearable pain on my left side exactly like you describe, it is usually worse after going to the loo.. I think i may have lots of scar tissue in my tube near the ovary that causes pain. (I am dx hydrosalpinx, a condition where I had a pelvic infection years ago, it was treated, but years later pain still there, tube/ovary had a small cyst, this turned into swollen, blocked tubes, now I need the tube removing, I now have a cyst on my right ovary. :-(.. fingers crossed that one just disapears !
Did they say anything about scar tissue when you had the laparoscopy? They can remove it, but sometimes it comes back i think. Its like a spiders web of tissue connecting organs! I think it's common to get scar tissue after any op though- having another op will increase the chance of more scar tissue...
I think my tubes and ovaries are very twisted and maybe attached to other bits.
maybe the dead bits of ovary like you mention cause this kind of scar tissue pain?
\I am obv. not a doctor though, !!! so i think it's best that you speak to your consultant about it,
best to right down any questions beforehand i find . I hope you get some answers that can help you . x
Re. pain medication, I am on : co-codamol, Acupan (nefopam), and sometimes paracetamol or ibuprofen.
I also tried amytriptaline a few years ago ( an anti-depressant) but it helps with the pain. I don't take it now though as it makes you really drowsy the next day and its not quite right for me.
Hope this helps somewhat, keep strong! hope you get some pain relief soon, xx
Thanks for your your help and advice. Your not having such a good time either, sorry to hear what you have been going through. They have never mentioned scar tissue to me, something else i will write down to ask about when i go back.
Did you get check up ultra sounds on your right ovary because what has happened with your left ovary? is that how that cyst was found, or were you getting pain on that side too? This was something i wanted to ask my consultant, so if a cyst was to develop on that side then it can be caught and not get to the stage it rupture's and damage's that ovary too, that way i have a chance to have a family when i'm ready, if it's meant to be.
I take Ibuprofen and paracetamol, i was given tramadol after my op, they were good for the pain but made me very lite headed and dizzy, made me sick a couple times too, i take strong medication to control my migraines, so i need to be careful what pain killers i take, it's a bit of a bummer.
I hope things work out for you, i've just had a feeling i may need the tube removed, the pain i feel and the times i feel it the tube must still be doing its job but no ovary there to work with, it can't be right.
It's good to have people that understand the pain your in and hear there stories of what they have been going through, so thanks again for taking the time to reply to me. x
Hi, I had a very similar thing. I had a twisted dermoid cyst on my right ovary and it was agony. I eventually had a laparoscopy and they removed as much of the cyst as they could as mine was also stuck to my bowel, it took 4 hours of surgery because there were lots of adhesions, womb stuck to bowel etc.
My pain was intermittent then and also worse at period time. I then had another cyst in the same place because all of the ovary wasn't removed. Then had another lap to remove the next cyst, the rest of the ovary and the fallopian tube.
I have also been diagnosed with endo so it is possible to have two things going on at the same time that cause different pains and are completely unrelated. My pain is now chronic but everyone is different and please don't think that this will happen to you! I seem to be quite unusual and have baffled all of my specialists so far!
I tried to find info regarding twisted cysts but couldn't find much, you could look up ovarian remnant syndrome (where remnants can cause pain) Do you know the type of cyst that you had? I think some of my ovary is still left now because it was still stuck to my bowel, they just removed as much as they could without causing damage to the bowel.
Send me a message if you need to, I had the second op for the same reason, pain still there so what have I got to lose? xx
Hi there, I'm really sorry to hear the pain you have been in, i thought i had it bad till I've read other girls stories.
I was never told what kind of cyst i had, and never thought of asking, i didn't realise at the time there was different cyst's. This all started with me 12 years ago and i didn't have a good experience with it all and how it was dealt with. I felt i was wasting the doctors time, and made me feel i was being OTT about the pain!
I'm very lucky now to have private health care, very different how things are dealt with and the better treatment that is given.
Something isn't right, I don't want to just leave it and have to deal with this pain the rest of my life. I know my consultant said if i decided to go back in to remove the parts of dead ovary had whatever else he will need to do, he can't guarantee it will stop the pain, but i'll never know unless i try, as you say what have i got to lose?
Do you get check up ultra sounds as you have had more than one cyst? Did they find the endo with the laparoscopy you got? As i read that endo can sometimes be deeper in and a lap can miss it, that i should ask about getting and MRI scan to check deeper in.
I hope you get things sorted, it's a horrible pain to be in.
I had 2 ultrasounds about 2 years apart. i think if they don't do anything to my right cyst (not sure what they'd do? drain it? ) then I'll ask for regular ultrasound check ups. The consultant kept saying it was looking very normal though..hmm thats what i was told last time! I don't know how much they can do they won't take out healthy tissue, if its small they won't touch it.
Like egg custard said, it may well not happen to you, everyone seems to have different gynae problems. Also, i'd be cautious with surgery as the more you have the more scar tissue build up.
I haven't had an MRI but maybe you can get one? i saw that some hospitals are doing pelvic pain trials with MRI.
When my cyst was found they said it was small and not big enough to be the cause of the pain i was in, through the years of getting check ups i was in a lot of pain, then a final scan i got they couldn't see the cyst and i was left, and either before or after that time was when the cyst ruptured and this had been missed, so there was no knowing when this happened, it may have grown rapid and ruptured and this was missed on my last ultrasound, i will never know.
I know not a lot can be done unless a cyst is at a dangerous size they need to be removed.
Worth asking about the MRI scan, if there is a way to check things out to make sure i def need another op then i would rather that than maybe causing more pain by just going ahead with an op and it doesn't help.
Hi, I think that if it is the kind of cyst that I had (dermoid) they have to take it out as they just keep growing and growing, mine was only cm. some types of cyst can just go on their own too. I did have an MRI because i was desperate to find out what was going on, I paid privately for it. That's when they found the second dermoid and probable endo.it's so difficult to know what to do for the best isn't it? I hope you get things sorted out in the end x
I had a similar problem. I suddenly had severe pain in my left side that lasted for 2 days. Finally convinced my husband I needed to go to hospital. Had an ultrasound done which showed a large cyst on my ovary and was told i needed emergency surgery. they told me they would perform a laporoscopy to remove the cyst. However when I came to I was informed that the cyst had severely twisted around my ovary and it had died and ended up having major surgery with a 4 inch cut across my abdo to remove the cyst, my left ovary and Fallopian tube. I was told that it is severely dangerous to leave the dead ovary as parts of this can break off which is dangerous. That was 5 months ago. My cut has healed however i still have a lot of pain above the scar particularly if I lean against the bench etc and there is a terrible numbness above the scar.
I am 16 and the past two years i have been in pain because they could not find anything and i was reading up on yours and seen you had got a ultra sound so i decided to and they had found a abnormal cyst and the size is 5cm by 5 .25 cm and the are talking about getting it removed.At first they didn't think that it was big enough but now they are saying it too big
I have the same exact problem only on my right side i am 28 and have been dealing with it for years its horribly frustrating. in December 2013 i had a ct scan xrays ultrasounds and so on. my gp gave me a hysterectomy leaving my ovaries because my uterus was tilted onto my spine and causing me terrible pain so he did the surgery thinking that there would be endometriosis also but there was none. two weeks after my surgery he pain on my right side came back and they found a cyst on the right ovary. so meanwhile my pcp had sent in a referral to have a colonoscopy, that Dr said from my symptoms it definitely sounds bowel related that was just last week and it came back negative for anything wrong. so now they recommend exploratory surgery but my gp is pretty sure that it is my problem so they are just going to take out the ovary at the same time. don't be scared to have that ovary removed its not working anyway and its causing you pain
I don't know who to speak to so I am on this forum. I am only 20 and I have been having pains on both my side for over 2 - 3 years, sometimes so bad I'm bed ridden and it hurts to even speak. I fainted once from the pain. I have been to my GP numerous times about it, but have been told I am young, need to have water and was turned away. And obviously becasue i was young, I listened and walked out with a reasonable check. Finally, after having fears of not being treated seriously, I went again a few days ago and the gp examined the surface of my pelvic area and her face dropped when she touched it. She also examined my breasts which are also painfull. There is a mass that has grown but moves. As this was the first time I had gone for my breast she said the usual 'you are young and don't need to worry'. But as this was my millionth appointment regarding my abdominal pains an abdominal examination was finally done... After I sat up, I can't believe she asked me why nothing has been done on previous occasions(as though I am the one who ignored this).
So she kept staring at it and my breast (not being able to look me in the eye like she was ashamed to say it to my face) 'if I think it is what it is, and I am certain it is this'.... she didn't even finish the sentence or mention what 'this' is.
She then mention in broken sentences she's thinking of sending me to an expert or something. And then she asked me..if anyone in my family had or has cancer. I answered by parents and siblings don't. And she replied if you have cancer it would be really unfortunate and unlucky because you are young and no one in your family had it...She then said 'I think we need to do an internal examination, but that's not appropriate, ultrascan won't show anything but we otherwise need to do surgery to be sure'...
Now what kind of a bloody answer is that, especially if you just said I am young and had nothing to worry about! I was confused wether she was saying I definItely do not have cancer (because I am young) or if she was saying there was a strong possibility I do. And I looked confused at that point. I think she thought I was confused about what she meant by the words 'surgery'.
because she replied 'it's basically a procedure where we have to cut you open'.
AFTER TELLING ME AAAAAALLL of that, she told me she wants to put me on the pill 'actually' for 21 days. I was so annoyed at the fact that I had been ignored these past years and the fact that cancer was even a possibility! My head was all over the place I was speechless!! so speechless I don't know why I seemed to distract myself from the situation and started to think about something I ordered online which hadn't arrived yet. I just said yes and she printed a prescription. And said to make an appointment in 6 weeks when she will book the blood test/scan and or surgery for my abdomen and scan for my breast but also to see her immediately when I want to.
While she was printing the prescription, I remembered another could be symptom (that my hair has been falling out), so I mentioned it and she promptly replied before letting me finish 'I don't have much time left with this appointment'. She was so concerned about leaving to go home she didn't want to listen further.
I took the prescription and left. I am so silly, I should have told her to 'SIT THE FUCK DOWN AND LISTEN TO ME BECAUSE I JUST FUCKING LISTENED TO HER SPEAKING IN BROKEN SENTENCES ABOUT CUTTING ME OPEN AND IMPLYING CANCER). I am sorry for the bad language, i promise I don't usually swear, but feel in this situation I need to.
Now I am upset. NOW.
I haven't picked up the pills yet because I just got back to work and the chemist is not open when I am free. And there is no one I can trust to give 'the pill' prescription to- to pick up for me.
So now my pain is worsening again and I feel that bed prisoning pain coming. What should I do, should I take control and call the GP and ask to speak to the doc and ask for a scan immediately or have my pills like a hush puppy and do the 'wait and see' thing like I have been for the past three year?
I am so scared and have no one to speak to about this and how to mention this to anyone, I have been distracting myself and avoiding thinking about it, but when I am sitting alone as I am now; I feel so empty and alone and hopeless... So I look to you ladies, please please help me on this.
Shyy, it has been one year since your post so I hope you've had your situation taken care of by now. But I definitely would have called the doctor back and not just waited longer!! It's unbelievable the way you have been treated!! I don't know if you're in the UK or the US or what, but in the US there are agencies you can report bad doctors to and it sounds like yours should be reported. I hope you're doing OK.
As to the other ladies, I'm sorry to hear you've all been through so much, especially those that have had it go on so long.
I've had my issues with rupturing ovarian cysts and pain, and had several surgeries related to female problems leaving me with only one ovary. I was afraid to have the last ovary removed because I've heard bad stories of being on hormone replacement, so I just endured my cyst rupturing pain for a few more years. I would actually be at my desk at work and, working through a rupture, I'd open my bottom drawer on the left side of my desk and put both feet on it so I could curl up a little to be able to bear the pain and still work. (I was in my mid 30's by now and had my kids already). I've also been to the emergency room more times than I can remember and being taken there once from work!
I eventually decided to have the last ovary removed and the doctor who did it told me she understood the pain I had been in because she had to go through 14 layers of scar tissue to find the ovary and almost could not even find it because of all the scar tissue. But having it removed was one of the best things I ever did because it got rid of 90% or more of the pain. I do have numbness along the upper part of my scar that goes completely across my lower abdomen from being opened 3 times, but it is still worth it. (The laparoscopies went through my belly button)
Also, being on the hormones have been a blessing in disguise. I didn't realize my one ovary I had wasn't working well so when I got on hormones, it made a huge difference in my life and how I felt and affected me in many different ways. But I would recommend only using good quality prescriptions for this.... My Dr gave me the best there was at the time which was something called the Climara patch. The generic for this was not even close to the same thing back then (2004) but the generic for it now is the same, or very close to it.
I am now 51 years old and have had my share of doctors who would not listen to me, so as I've gotten older, I've learned to speak up and to also make sure I only go to good doctors. The doctors are only making a living because of us!!!! So they should listen to us! If not, go to another doctor!!!!!!! It's worth it when you finally find one who is competent and will also listen to you.
I found your post by googleing my own symptoms and it seems like you and I are going through the same thing although my ovarie hasn't been blown to peices just yet. Lol I had my first ovarian cyst rupture in my left ovary when I was 16 and a second one when I was 20. I am 22 now. About 4 months ago I started getting these horrible pains in my left side right where both cysts ruptured. I thought I had another one and finally got rushed to the hospital one day when the pain got so bad I was in tears on the floor in the fetal position. It diloesnt feel like it did when its rupturing. Its more of a sharp aching than a twinge and stabbing. The doctors did an ultrasound and said there were no cysts or free fluid from a ruptured cyst and couldn't tell me what was wrong. A few days later my gyno said she believed it was scar tissue caused from my previous ruptured cysts being aggravated by my upcoming period. I've since started a new BC which has helped a little but I still get the pain. I'm still trying to find something else to help it. So far I have not been offered any solutions by doctors. My gyno said she could try surgery to clear out the scar tissue but that could cause more to form. Other than that, she said to take the BC and advil if the pain flares up. I wish there were more that we could do.
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