Just diagnosed with an extremely large ovarian cyst. Need some advice - Mothering Forums

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#1 of 9 Old 09-02-2012, 12:26 PM - Thread Starter
 
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I'm not sure if this is the right place to post this, so sorry if I'm in the wrong place :)

 

I could use some advice/feedback/help/experiences right now -- 

 

On Friday I was diagnosed with a 17x14cm cyst on my right ovary (that's larger than a grapefruit, by the way). There is also fluid in my pelvis, which the u/s tech said may have been caused by another cyst that has ruptured. My gyn wants to schedule surgery ASAP to remove the cyst, as well as my ovary. It is filling my lower abdomen pretty much completely, which means that it's compressing my bladder and ureters (making it very uncomfortable and difficult to pee), pressing on my kidneys, and has caused my uterus to tilt and basically "squish" like a pancake. It also presses on my spine when I lie on my back, which has caused quite a few lower back/hip/leg problems over the past month. Not to mention it looks like I am about 4 months pregnant. 

 

I'm 30 with no known history of cysts (reading over the symptoms now, I am sure I have had one or two over the years, but nothing that has ever caused any problems). DH and I have been TTC for a little over a year with no success.

 

So, here are my questions -- and sorry if these are "all over the place." I haven't experienced anything like this before, and need some guidance.

 

I am extremely worried about having surgery. My gyn gave me up to 4 weeks to get everything with work/life in order and schedule the surgery. He said he would have done it right away if I'd been able to, but is willing to wait a few weeks if I need it. They will not be able to do this laparoscopically of course, due to the size, so this will be standard abdominal surgery. I am extremely nervous about the recovery process. How long should I expect to be out? I need to schedule this with work, and really don't want to be out for a month or more. I know my health is the most important issue right now, but my job is also very important to me (and to my family, of course, since I am the primary breadwinner right now).

 

I am also very nervous that this thing will burst before I'm able to have the surgery. My Dr didn't give me any specific instructions or precautions, but should I be avoiding strenuous activity? I imagine if a cyst this size ruptured it would be a medical emergency (or at least feel like one!). 

 

And finally, how will having one ovary affect my fertility? I have seen varying experiences, and most things I've read are fairly positive, but I'm worried. I've struggled with TTC for over a year, and this just seems like another road block to overcome. :(

 

Thanks for reading, and sorry this was long. I could use some advice or input from anyone who has experienced anything similar. I am a "planner" and really just need to know what to expect, from someone who's been through it. I think that will help me cope a bit better. 

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#2 of 9 Old 09-02-2012, 02:45 PM
 
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Hi justclaire, I am sorry to hear about your difficulties. I had a smaller ovarian cyst removed 24 hours after it was discovered (because of the risk of rupture especially given its particular location on the ovary) and my recovery was:

--a few days of needing help with everyday tasks (like walking to the bathroom)

--another week and a half recovery at home

--another 2 weeks before I was driving myself

--another 4 weeks before I go do strenuous things (like lifting something heavy).

Feel free to PM me if you have specific questions about my experience.

 

In terms of removing an ovary, it was something that was considered, but my surgeon actually would not do it until we had a second opinion so we could understand the risks and potential benefits of removing the ovary. Ultimately, I opted to get three opinions. Do you have the option to get a second opinion?

 

Thinking of you and wishing you the best in the coming weeks and on continued your TTC journey.


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#3 of 9 Old 09-02-2012, 05:25 PM - Thread Starter
 
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Thank you so much for sharing your experience! Sometimes knowing what to expect is all you need to process and make peace with what's happening. 

 

I am lucky in that my OBGYN is regarded as one of the best in the state, and is on the teaching staff at the hospital where my surgery will be performed. He did say that he will try to save my ovary, and does not advocate the routine removal of an ovary for a cyst. Since mine is so large, and appears to be fairly complex, my ovary may not be able to be saved and I am coming to terms with that. He won't know until he's in there, but I trust him to make the right decision. 

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#4 of 9 Old 09-02-2012, 08:40 PM
 
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Hello, this has happened to me twice over a two year period. First, you doctor does not need to remove your ovary. You need to ask your doc why this is necessary. Doing so it a bit dated and old school. In my experience this would only occur if the cyst was causing some type of torsion or twisting of the ovary causing it to lose blood supply. Your ovary's are important, I would get a second opinion immediately. 

 

I my situation the first cyst ruptured and I didn't know what was going on and laid in bed for 4 hours. I was bleeding internally and my blood pressure dropped very low. I could not even walk. I had emergency surgery and the remnants of the cyst were removed along with the blood in my abdomen. Both or my ovaries were saved. 

The second time I had two huge cysts one on each ovary. One cyst ruptured. I once again went in for surgery and both of my ovaries were saved. 

 

With a cyst that big it is possible for it to rupture spontaneously, but not a given. Avoid sexual intercourse because it can cause a rupture. 

 

Like I said get a second opinion!!!! And from my experience I wish I had found these cysts before they ruptured. I had severe pain along with numerous blood transfusions, and severe bruising. Get the surgery sooner rather then later. 

 

In both cases my recovery took 2 weeks to be back to doing minimal activity. Im not sure what kind of work you are in but I think you could work a reduced schedule after two or three weeks. 

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#5 of 9 Old 09-03-2012, 07:07 PM
 
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Quote:
Originally Posted by justclaire View Post
He did say that he will try to save my ovary, and does not advocate the routine removal of an ovary for a cyst. Since mine is so large, and appears to be fairly complex, my ovary may not be able to be saved and I am coming to terms with that.

 

I was in a similar situation. It was hard to come to terms with, but I was glad to know the options.

 

To clarify, after my surgery for the cyst removal, because I had recurring cysts, the possibility of ovary removal was revisited. That's when I got the multiple opinions. smile.gif

 

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Originally Posted by Alena Darrish View Post
 Im not sure what kind of work you are in but I think you could work a reduced schedule after two or three weeks. 

 

You may also want to ask about the possibility of working remotely while you're recovering if you have the kind of work where you can do that.

 

Take good care and, if you feel comfortable, let us know how it goes.


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#6 of 9 Old 09-03-2012, 07:39 PM - Thread Starter
 
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Originally Posted by Alena Darrish View Post

Im not sure what kind of work you are in but I think you could work a reduced schedule after two or three weeks. 

 

I'm in Advertising, which is a fairly stressful career path but I love it. I think I'm going to tentatively plan on taking 2 weeks off and then 1-2 weeks of working from home. After that, I'll play it by ear and take more time if I need it, or return to work and take it easy for a while. 

 

Thanks again for your advice, everyone. It's very appreciated! I know I need to schedule this soon. I tend to procrastinate with my own health issues, but this time I'm definitely NOT doing that. This cyst was actually caught "by accident." I actually went to the Dr assuming that I had a kidney stone, when in fact my cyst was so large that it was completely squishing my kidneys (which are fine for right now -- just very crowded).

 

I wish I'd paid more attention to the symptoms earlier on -- they seem SO obvious now that I know what the issue is, but I shrugged them off for almost 6 months and wish I hadn't. I'm glad I finally went in and can now get this taken care of. I want this thing gone, and to start feeling like myself again :)

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#7 of 9 Old 09-04-2012, 08:13 PM
 
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Originally Posted by justclaire View Post
I'm in Advertising, which is a fairly stressful career path but I love it. I think I'm going to tentatively plan on taking 2 weeks off and then 1-2 weeks of working from home. After that, I'll play it by ear and take more time if I need it, or return to work and take it easy for a while. 

 

I've always played it by ear a bit because I never quite know how I'll feel after surgery. I hope you have a smooth recovery and can back to doing what you love soon!

 

Quote:

I wish I'd paid more attention to the symptoms earlier on -- they seem SO obvious now that I know what the issue is, but I shrugged them off for almost 6 months and wish I hadn't. I'm glad I finally went in and can now get this taken care of. I want this thing gone, and to start feeling like myself again :)

 

I was surprised when I had my first cyst and like you once you have one and know what it is the symptoms seem so obvious. But it's not obvious if you've never had one. I hope you start feeling like yourself again soon. hug.gif


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#8 of 9 Old 10-05-2012, 12:19 PM - Thread Starter
 
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I just wanted to update this thread for anyone who may go through this down the road. I had my surgery yesterday, and the Dr removed a cyst filled with over 800cc of fluid (about 30 ounces -- between the cyst itself and the fluid, the total weight was around 3.5 lbs). In the weeks prior to the surgery the total mass of the cyst had grown quite a bit; I looked about 4 or 5 months pregnant as of yesterday morning. Luckily, my ovary was fine, and did not need to be removed, so I'm very thankful for that. 

 

The surgery itself went well, and I was surprised to be able to leave the hospital about 8 hours post-op. I'm feeling OK, but very, very sore (as expected). I am definitely not someone who accepts "help" easily, and it's quite frustrating to not be able to get up or go to the bathroom on my own, though I was able to take a shower by myself this morning. I'm trying hard not to push myself, and to take it easy for as long as possible. My pain medication is making sure that I am getting a lot of rest, at least! 

 

This really was a "best case scenario" and I'm so happy to have it behind me -- I realize that things could have been much worse, and there's a lot that can go wrong with any surgery. 

 

Thanks again everyone for your help and advice! For anyone who finds themselves in a similar situation and comes across this thread, feel free to PM me and I'll be happy to answer any questions. 

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#9 of 9 Old 10-07-2012, 08:44 PM
 
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Thanks for updating. I hope your recovery goes smoothly and that you're pain-free soon. I'm thinking of you! hug.gif
 


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