Waiting for surgery

Hi everyone,
First of all I'd just like to say how wonderful this forum has been, with such a wealth of information for people like me who are not too sure what is going on with their bodies at the moment, and it so good to find out that I am not the only one going through the same kinds of things.

I have been diagnosed with 2 cysts on left ovary, also have fibroids of varying sizes.  One cyst is over 5cm.  I am currently waiting for surgery, (have been so far for about a month) and so far have no date for it.  I am not sure if it is wise to keep on waiting, as what is the possibility of it being something worse than just a cyst?  I am really not sure just how long it will take to get in, my gyn has sent of another letter stating that it is a priority case to try to get me in earlier.  I live in Australia, and don't have health insurance, so am on waiting list.  It probably works different here to the US.  I have been in more and more pain in the past few weeks, mainly back and abdo pain, but it also goes down my thighs.  Also have had intermittent constipation, gas and diarrhoea. Also bleed approx every 16-21 days with really bad period pain that causes me to double over. I am just so exhausted all the time and just feel like I am dragging myself around.  I have been trying to keep positive about it all, but I also have a very real gut instinct that something is really not right.    If I don't get in for the surgery for another month or two, would it make a lot of difference if it was cancer?  I have had the CA125 test, which  came back ok.

[dalip]

Because of the time difference to the states you will proably get more useful replies later on this afternoon.I wwill keep watching to see the outcome and you could always try posting to dr goodman,i did and she was spot on.Dawn

[Helmar]

Hi Pam... I'm from Downunder too,and I just want to say ..don't mess around and wait while the medical profession think about whether they will send you for tests etc. Your symptoms sound very similar to what I had...the bowel changes and bloatedness...which in my case went on for about 9 months, before the Doctor eventually sent me for a Ct scan and told me the bad news. Of course these symptoms can account for other issues, not necessarily cancer... that's why Ovarian cancer is hard to detect. When you see your Doctor, INSIST on having some tests... like a Ct scan. Don't let these Doctors 'fob' you off. It's your life. I hope you will get some action in this direction very soon. Please let us know how it goes for you.
Best wishes....Helmar....

[lilly64]

Hi all - I live in the US.  I am 42 and also have 3 daughters (15 yrs., 10 yrs, and 20 months).  I had 2 OC's removed in May of '04.  They were only painful with a bowel movement or with sex (that's how I knew something was amiss) and the pain was mild.  I'm now going through the same issues as you gals.  Fast forward to now. I have constipation and bloating, extreme lower back pain and groin/thigh/leg pain. Also pain in my lower abdomen on both sides (now have cyst on my right ovary). I have to take one ex-lax about 2-3 times per week before I go to bed to clear me out. Otherwise the pressure from the bowels along with the cyst is too much to handle. Like others have posted in these forums, the Dr.s don't know anything until they go in through surgery. But it's hard to get a Dr. to listen to you - they like to take a "wait and see" approach and also the "how much stress are you under" ****. But we women know our bodies and this much pain, i feel, calls for more attention. I'm pursuing a gyno/onco Dr. Apparently, they take you more seriously (as others have attested to in these forums). This time I feel it is something along the lines of the cyst "glued" to my bowels or twisted around something, etc.  I've had the pain for almost a month now and they first thought it was a kidney stone (that's how bad it is).  Have been taking vicoprofen for a compressed neck disc and this takes the edge off the gyno pain a little.  I'm supposed to have neck fusion surgery at the end of January, but I think I have to figure out the gyno issues first.  What they know now is that i have a cyst on my right ovary and some fibroids.  My husband and kids are the same as yours' - I'm always sick!  Although my husband keeps telling me to go to the new Dr., it's just so time consuming with all the testing, etc., but now that my cycle is over, i will pursue it.  I am hoping that your country has some sort of national health care so that you can seriously get some treatment.  You can't let this slide.  Here we have "county" hospitals, etc. for people with no insurance. Sorry for this being so long, but wanted to join in and let you all know that you/we are not alone. Good luck to you and know that I feel your pain - literally!

[dalip]

99% of ovarian cysts are benign.Sounds like you have 2 different issues here. The fibroids are probably causing the painful periods(never had them myself but have read that they do)and the other symptoms are from the cysts. I had a couple of smaller cysts on my ovaries and had the same symptoms.I am from the uk so had to rely on the NHS but i did pay privately to see consultant(waiting lists are about 2-3 mths)but once that was done i was in within 5wks to have it all removed.I would advise that you keep pushing or go to the ER(A&E over here)and play on it a bit. From everything i have read on this forum that seems to be the way to go. Good luck and keep us informed. Dawn
Ps somtimes larger(over 4-5cm)cysts can twist and that can be really painful.

[diamondgirl2]

Thanks for your comment.  I thought that it was probably 2 separate issues, on US report also said that it was possible adenomyosis which would also cause the heavy bleeding and pain.  The back and stomach pain however used to come and go, I would usually have a few painfree days before it started again, but now it is always there and much more painful, am living on painkillers at the moment.  Also my stomach is very bloated, feels very similar to being a few months pregnant.  I am very small and have never really carried much weight around my stomach, so it is very noticeable to me.  I haven't actually put on weight on scales, in fact I have lost a couple of kilos, but everything is really tight around my waist.  I don't have much appetite anymore either.

[dalip]

same here. I am very small and found i lost weight too. Because my left ovary and cyst was stuck to my bowel i had major issues with bm. So much so i was first sent for a colonoscopy(it was this doctor who ordered the scan,thank goodness she did)also had problems with gas(painfull when going past ovary)and painfull urination.The left groin was sore,sex was out of the question and i could not get comfortable sitting or in bed. Like you i constantly took painkillers which just about made it bearable,im surprsied i was not addicted to them.The scan can usually tell if the cyst is solid,fluid ect which is a good indication as to worry or not.How old are you, if you dont mind me asking?.Dawn

[dalip]

Hear Hear!!Been there and got the biggest t-shirt.Good luck to both you ladies.Keep pushing, at the worst you are wrong,so what that just says you are ok,if you are right you saved your own life(bit dramatic i know but you know what i mean)these docs needs to listen to us women who have "GUT"insticts.Dawn

[dalip]

Amazing.I too am 47 but i have 3 adult daughters(2 at home)who apart from 1 all had no time for my illness. They said "there is always somthing wrong with you".I felt this was so unfair as i work full time do all the cooking,cleaning and washing and had not had a day off work in 3 years.My husband at one point even said i enjoyed being ill!!!!!.When they first found the cysts(the specialist was trying to say it was IBS!)i nearly kissed the doctor,but she was female!lol. I is very diffacult to get people to understand especially those who have no comprehension of female issues.I know none of this really helps you but at least you know you are not alone.Dawn

[diamondgirl2]

Thanks Dawn, it is certainly comforting to know that I am not alone.  I consider myself quite lucky though, as my husband has always been great, but I have often had the "there is always something wrong with you " from the boys.  They are trying to understand though. It's a pity that a couple of your girls haven't been helpful, unfortunately they may find out what it is like one day and then they would have more empathy I suppose. Although I certainly wouldn't want to wish this on anybody. It's great to be able to talk to someone who understands what i am going through.  Pam

[diamondgirl2]

I'm 47.  Married with 3 young adult sons all still at home.  Living in a household of males, they are all trying to understand what I'm going through, but I know that they are all a bit baffled by it, especially the fact that I am constantly not feeling well!

[diamondgirl2]

Thanks to you all for your wonderful support.  I've decided that if I do not have any word of a date by early next week I am going to push for a CT scan.  You are right, all the doctors seem to take a very wait and see approach and yet we are also told as women to be vigilant about the symptoms of this "silent disease"  It seems somewhat hypocritical to be advertising about ovarian cancer and to look out for these symptoms and then when you go to the doctor with the exact same symptoms they seem to fob you off like you are complaining about nothing.

I also had the same thing as another post with my last US - they could not seem to find my left ovary,all the pain has been on the left, and then when she did locate it she said that she wasn't even sure if that was what it was.  So who knows what she was really looking at.  She told me this during the scan but on the report she said that there were two cysts and that the ovary was enlarged.  I am not so sure about the accuracy of any of these test anymore.  

Best wishes to you all and thanks once again for your support.
Pam

[lilly64]

This is what I just wrote in a previous section (I feel the same way):

You know, "they" say there are no warning signs of ovarian cancer; well, as i read all of these posts, there are PLENTY and maybe someone should tell the medical field that. Every case of cancer I've read in these posts indicate that there are bowel/stomach and sometimes pain issues before they are diagnosed. And most of these woman had complained of that to no avail with their Dr.s. As everyone says, most are benign, but even benign ones need attention most of the time if they are causing problems/pain and interfere with every day life. I think it's because we all get cysts every month and they are supposed to dissolve within a cycle or two; it's the normal process. However, sometimes that is not the case and Dr.s don't want to take the time to listen when the stats tell him/her that it will dissolve and to live with the pain until it does. Do Dr.s really think this is fun for us or that we want to be bothersome. You can bet your ass that if a man went in with rectal problems, he would be thoroughly evaluated AND TREATED for prostate or colon issues. It's not fair; and now I'm going through this and really am trying to ignore it, but my symptoms tell me otherwise.

  

  

[Best59]

Hi all,
Doctors are the same everywhere... Here in the US too. I have back tailbone pains after uterus removed in July. I had the "fancy" adenomyosis, with heavy and painfull periods, and with 5 cm tumor removed from the uterus... I had vultra, bloodtest, and NOTHING per the doctor, my ovaries, and tubes are "normal" sized, no cysts. I'm very suprised, because I still have strong pains. The same doctor told me I have a mass, because he touched. I will go back and will ask for CT too.
I stop to talk about my pain in my family, because I find out for my only son is too much stress, and pressure. He is very close to me, my best friend, and asking me all the time, if I have pain or not. He is a real sweetheart... My husband is much "stronger", but he is very passive, I think, the support training is missing from they life, undeveloped...Sue