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Old 07-16-2008, 07:46 PM   #1
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Ovarian Cysts + Fibroid = Hysterectomy???

Hello all, and thanks for taking the time to read this. My wife was recently diagnosed with an ovarian cyst and at 5.5 cm is at the size the surgeon recommends removal. However, she also has a large fibroid near the top of her uterus (that is actually interfering with the ultrasound results for the cyst).

She has suffered from irregular and very heavy periods for several years now, including severe to debilitating pain and heavy bleeding and discharge. She is now 44 and a visit last year to an endrochronolgist (sp?) diagnosed her as peri-menopausal. (However, that experience with that particular physician was so awful that I really doubt his diagnosis.)

We are currently waiting for the results of blood tests and a endometrial biopsy. The surgeon is recommending a laproscopic (sp?) procedure to remove the cyst, and likely remove the entire ovary, and to do a frozen section on the second ovary to check for irregularites. However, due to the fibroid, whose position and size is not condusive to removal techniques, the surgeon is also recommending a super cervical hysterectomy (also done as a lap procedure). His recommendation for this was to address my wife's difficult periods.

I've read lots of peoples' stories on this site (which is great, BTW) and I'd say that the majority of women have been somewhere between happy and satisfied with a hysterectomy, but when one goes wrong, boy howdy does it go wrong in a bad way. I was just wondering if anyone has been in a situation close to this and would like to share their story or advice. We normally talk everything through, but I'm so far out of my league on this one, I can't offer any advice, just support. I'm looking to be able to help her more.

 
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Old 07-16-2008, 08:23 PM   #2
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Quote:
Originally Posted by wlhartin View Post
We normally talk everything through, but I'm so far out of my league on this one, I can't offer any advice, just support. I'm looking to be able to help her more.
Hi wlhartin! It is good to know that you want to help your wife in whatever way you can. That is quite admirable!

I don't have a lot of information on your wife's situation. I've had some cysts, but most of them have resolved (even one composite cyst) and I don't know their sizes. I recently had a LAVH (laparoscopically assisted vaginal hyst) as treatment for cervical cancer (Ia1). I am really pleased with the hyst. I go for my 4 week follow up appointment Friday.

Anyway, I also had a fibroid. Back in December I had UFE (uterine fibroid embolization) which was suppose to shrink my 9.3cm fibroid. I think my gyn/onc said the fibroid was at 8cm when she did the hyst, so it didn't shrink very much. This means when my gyn/onc did my surgery, she had to pull out my 8cm uterus plus its 8cm fibroid. She said she had a difficult time getting the uterus out. And it feels like it! Let me just say I was a bit sore for a few weeks!

That's all I can think for now. Have you looked at the Center for Disease Control and/or the National Cancer Institute? I don't know that your wife has cancer (and I really hope she doesn't), but those websites will give you some good information.

Write back when you have more questions. We'll do our best to answer them.

 
Old 07-16-2008, 08:47 PM   #3
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Hi, I had a dermoid cyst after I had my second child. I had that removed surgically but the dr left everything else intact. However, over the years I have had fibroids and some have been painful. None were as large as your wife's. My first dr recommended I have a hysterectomy. After a little research, I found out that fibroids often shrink after menopause. I went to another dr and he said he would surgically take out the fibroids. I said I would wait as I was starting to go through menopause. Well, for me, that was a good decision. One fibroid is completely gone and the other two have shrunk to the point where I no longer have any pain. Now I just deal with the "thrills" of menopause.

 
Old 07-17-2008, 06:24 AM   #4
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Hello,

I agree completely with what Triple777 is saying. It is true that removing a fibroid and an ovarian cyst is much more work than simply snipping off the ovary and taking out the uterus.

The thing that concerns me in your wife's case is that she is having debilitating pain with her fibroid. Has she considered other options besides a hysterectomy like the emoblization process that PickleEyes mentioned or having the fibroid removed as has been suggested by Triple777? You need to know that there definitely are other ways to handle uterine fibroids besides a complete hysterectomy (endometrial ablation is another procedure which removes the endometrial lining and leaves the uterus in tact). Doctors are way too quick to recommend this radical removal procedure because they figure if the woman is no longer making babies well what's the use ?(!). This attitude is slowly changing but not fast enough, I'm afraid. In my humble opinion, only a cancer diagnosis should require any removal of parts as it is well known that this procedure under these circumstances is most often curative.

In reference to your wife's ovarian cyst, do you know what kind of cyst it is ? Is it filled with fluid or is it a complex cyst or perhaps a solid cyst ? This is very important to know as if the cyst is fluid filled it is most likely harmless and may even disappear on its own over the next few cycles (another ultrasound will have to be performed). Why does the surgeon want to take a frozen biopsy of the OTHER ovary ? Radiologists and gynecologists are usually quite good at seeing suspicious looking growths on an ultrasound and being able to tell if they need to come out. Has your wife had the CA-125 blood test ? This checks for a cancer antigen that is associated with ovarian cancer. Keep in mind that ovarian cancer is rare (but it does happen, unfortunately).

By the way, most people don't know this but women grow cysts on their ovaries every single month. They contain eggs that are released into the fallopian tubes at ovulation time. Therefore, it is highly likely that an ultrasound will show cysts on the ovaries at any point in time. 5.5 cm is not unusually large as regular ovarian follicles can go to approximately 5 cm and still be normal. What is most important is what the cyst looks like. You may want to get a copy of the radiology report to see what it says. Here in Canada a simple (fluid filled) ovarian cyst has to grow to 10 cm in order for a surgeon to consider removal (as then it may cause structural problems with the colon and bladder or may torse the ovary) and they will rarely consider going in for a simple cyst that is smaller than this. I have a simple 8 cm ovarian cyst on my left ovary and have decided to simply keep an eye on it. If possible I would like to avoid having surgery .. if it grows larger then I may not have a choice but I would certainly never have a hysterectomy (and by the way, I too have a fibroid in my uterus .. many women do .. I am lucky in that it does not bother me).

As you can see, the issue is not clear cut and you need to see about perhaps getting a second opinion before making your decision.

I hope all of these posts have helped you somewhat. Come back and let us know how your wife is doing. All the best.

 
Old 07-17-2008, 09:50 AM   #5
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Thank you so much for your replies and information. I'm going to share this and this site with my wife. The location of the fibroid is interfering with the ultrasound (the internal one, too) for detailed diagnosis of the cyst. An ultrasound in October 2007 had a notation on the report that this ovary was "enlarged", approximately twice the size of the other one,l she has reported pain in the location and it remains after cycles. The size and location of the cyst concerns my wife's physician that it will fall and "twist" the ovary, with the associated risks and pain. Right now, I am agreeing we should address the cyst (but, I'm admittedly clueless). It was the rest of the "in for a penny, in for a pound" sort of attitude about the rest of it that bothered me.

The key thing here I believe is a second (or more!) opinion. Thanks again! Any more comments or thoughts would be great! I'll make updates when we know more.

 
Old 07-17-2008, 10:50 AM   #6
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

( removed )

It's so hard to get a definitive answer on topics as things conflict based on opinions. At 48 in an annual my fibroid was discovered for the first time at 4.2 cm. Assumption was it would shrink as I neared meno. Unfortunately, 6 mos. later it had almost doubled in size and I also had a large ovarian cyst. I was having symptoms of high estrogen and went to the gyno who initially didn't pay much attention to me. Frustrated, I started reading and one book in particular touted the natural progesterone creme as a means to counteract the estrogen. I asked gyno and internist about it and neither seemed well versed on it and again sort of blew off my symptoms and pain as perimenopause. I went to a compounding pharmacy and got some bio-identical progesterone. After 2 weeks some of my symptoms began to subside and I finally got one of my drs to do a hormone panel which showed my progesterone quite low and my estrogen very high (above range by 200 points for that part of my cycle). THEN they paid attention and did a f/u ultrasound (BTW I changed gynos to one who listened!) and that's when they found the fibroid had grown so much and the ovarian cyst and everyone started scrambling and the hysterectomy option looked imminent.

A second opinion told me to stop the progesterone creme as it would cause the fibroid to grow (like you say Triple777) but that was the first place I'd heard that --- never found that correlation online, only that estrogen affected growth.

Also Triple777, the part about hormones surging before menopause... I'd read it was possible but 4 doctors I've seen during this seem to not see this as often as just a shut-down of hormones. But mine went high for at least three months (based on symptoms and fibrocystic painful breasts that were diagnosed same time). They were back in a normal range a few weeks ago.

I do have a question about this part : <The average size of the uterus including fibroids in the late thirties to early forties is a ten to twelve week pregnancy size (about 13cm in the largest dimension), in the middle forties fourteen to sixteen weeks is average (about 17cm in the largest dimension), and in the late forties to early fifties eighteen to twenty weeks is average (about 21cm in the largest dimension).> I've never read this nor did any of my doctors mention this. With my fibroid in the 7+ cm range my uterus was considered 12-14 weeks and not one of my doctors thought this was "normal" or ok. They considered this a problem. Are you saying there are statistics saying the true average uterus size of all women in these ages are this or is this just a study related to women with problematic fibroids?

I have been anti-estrogen now for the past couple months on diet and exercising (not overweight to start which can increase estrogen). The fibroid appears to have shrunk based on last ultrasound so I'm wondering if I can make it now without surgery. Will ultrasound again in a few months to check it.

The cyst - was around 5 cm and may have been larger at some point since at that size there was a small amount of free fluid in abdomen. It appeared to be fluid filled, functional and simple. 4 weeks later it was GONE!!! as was fluid so it resolved on its own. (we did do a CA125 for reassurance as well). So they can resolve quickly.

I'm wondering if you can't get good visualization with either or both vaginal and abdominal ultrasound though if an MRI would work. Cheaper and less invasive than surgery if the cyst might resolve on its own.

Last edited by moderator2; 07-17-2008 at 03:05 PM. Reason: please do not ask members to post against the rules

 
Old 07-18-2008, 07:43 AM   #7
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

I wouldn't have the surgery personally. I just went through hell after my own full hysterWRECKtome...there are other options. If it's not cancer...then find another solution. There are lots of women out there that regret this decision, I being one of them. I went into SURGICAL menopause and it's been hell. Menopause solves lots of these issues that women experience during perimenopause. Not fun, and the quality of my life has been a nightmare. So..my personal experience, and advise. It will pass in time, if it's not cancer, leave it alone. I understand the pain, because I too had it, but what I am going through now, I would take that pain back any day of the year! Good luck. Look into HRT or birth control that will help...before electing to have organs removed.

 
Old 07-20-2008, 01:42 PM   #8
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Quote:
Originally Posted by LilliTN View Post

It's so hard to get a definitive answer on topics as things conflict based on opinions.
LilliTN, it is difficult to find accurate information about this subject, but it is out there, you just have to really search for it. ( removed ) I am not a medical person, but I've read a lot about this subject. One of the problems is that gynecologists are surgeons, not endocrine specialists, so they appear to know very little about hormonal imbalances. I've read that approximately 50&#37; of women develop fibroids, and at least half of them develop large symtomatic fibroids. I personally know several women who have had a hormonal surge in their late 40's along with reading about it being very common. Ultrasounds commonly cannot visualize everything as you have experienced. You are right about the MRI, that would be the best bet. It is better to leave fibroids alone unless they are causing you major problems and then myomectomy, the surgical removal of the fibroid is a reasonable option. Here are some government links (you can copy/paste to your browser) to studies about fibroids that you might find interesting:

http://www.ncbi.nlm.nih.gov/pubmed/18328788?ordinalpos=1&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pub med_DiscoveryPanel.Pubmed_Discovery_RA&l inkpos=2&log$=relatedarticles&logdbfrom= pubmed

http://www.ncbi.nlm.nih.gov/pubmed/18395493?ordinalpos=1&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pub med_DiscoveryPanel.Pubmed_Discovery_RA&l inkpos=1&log$=relatedarticles&logdbfrom= pubmed

http://www.ncbi.nlm.nih.gov/pubmed/12738981?ordinalpos=1&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pub med_DiscoveryPanel.Pubmed_Discovery_RA&l inkpos=2&log$=relatedarticles&logdbfrom= pubmed

Keep looking and you'll find your answers. Good luck!

Last edited by moderator2; 07-20-2008 at 03:08 PM. Reason: untrue statement about the posting rules - please do not assume authority to tell members the rules

 
Old 07-24-2008, 09:51 AM   #9
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

wlhartin - Have you been able to get an appt. for a second opinion? Based on my own experience I can tell you that even an ultrasound at a different facility might be worth your while. Not all equipment or technicians are equal. Where one place might not be able to visualize well another one might. I would assume your bloodwork is back by now too. Did they do a CA125?

 
Old 07-25-2008, 01:09 AM   #10
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Hi WLHartin,

What LilliTN says is right on the money. The only reason I can see that the fibroid is obstructing the view of the cyst is that your wife had an internal sonogram. I am sure that if she had an external ultrasound they would be able to visualize the cyst because they are going from the outside and don't have to get past the uterus to see the cyst (it would be located just behind the bladder). Why not get a second opinion. When my simple 8cm cyst was discovered, I went to have a second ultrasound (internal this time .. my first was external) to see if the two opinions about the cyst matched and if they both saw the same thing. If the cyst is a simple cyst, it will most likely disappear in a few cycles.

As for the fibroid, your wife can look into having a myomectomy or also into a new procedure that cuts off the blood supply to the fibroid so that it shrinks. For this last procedure, your wife would not have to be put under (just a spinal or epidural) and it is a day surgery. If you have a good surgeon you should be given all of the options. Poor surgeons usually recommend a hyst because it is easier and actually pays more (bigger surgery). Be sure to get a second opinion if necessary and when you have all of the options with associated risks, you can then make a sound decision that you can live with.

Let us know how you are doing and take care.

 
Old 07-25-2008, 07:08 PM   #11
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Thanks again to everyone. We meet with the surgeon for blood test and biopsy results next week.

 
Old 07-27-2008, 02:23 PM   #12
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Quote:
Originally Posted by menomadness View Post
I wouldn't have the surgery personally. I just went through hell after my own full hysterWRECKtome...there are other options. If it's not cancer...then find another solution. There are lots of women out there that regret this decision, I being one of them. I went into SURGICAL menopause and it's been hell. Menopause solves lots of these issues that women experience during perimenopause. Not fun, and the quality of my life has been a nightmare. So..my personal experience, and advise. It will pass in time, if it's not cancer, leave it alone. I understand the pain, because I too had it, but what I am going through now, I would take that pain back any day of the year! Good luck. Look into HRT or birth control that will help...before electing to have organs removed.
really agree with you there....had it to make me feel better and now at 34 feel like a freak that cant wear a bikini....so wrong!

 
Old 08-01-2008, 09:58 AM   #13
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

I disagree totally! I had an abdominal hysterectomy 4/15/08 and it was the best decision I ever made! two ovarian cysts, one on each side for over a year. We kept watch but they did not want to detach after 12 monthly cycles. Then, beginning last November, I went to the ER with the most horrible pain I have ever felt. Seemed one had twisted.
After surviving that ordeal I went back to the ER in early April. Then, the right ovary twisted FIVE times and I cannot begin to describe the pain. I immediately scheduled a hysterectomy without even thinking. ( also had five fibroids but they never gave me any trouble).

I was scared of having the surgery, of course, and I read everything I could on the subject. I had both ovaries removed, uterus, tubes and cervix. Everything. Because I wasn't in menopause before, I was worried what I would feel like after losing both ovaries My doctor put me on the Vivelle patch and so far so good. I do plan on getting off hormones in just about a month (I am waiting until the end of summer). I am on the lowest dosage and my husband is even surprised at how smoothly things are going. I experience about two hot flashes a day...that's it.

The hysterectomy was the best thing for me. Having ovarian cysts bothered me and I am sure glad they are gone. Best of luck in whatever you decide to do!

Karon
TAH BS 4/15/08

 
Old 08-01-2008, 01:05 PM   #14
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Re: Ovarian Cysts + Fibroid = Hysterectomy???

Hi Karon,

Glad to hear that your hysterectomy etc.. went well for you. Unfortunately, it is not the same story for everyone and this is often the problem. One cannot really know how the procedure will affect someone until she actually goes through it. For some its the best thing that ever happened and for others its a nightmare.

If the ovaries are removed, the hormone replacement therapy is necessary with or without the hysterectomy .. it's the ovaries' presence that determines this so if you have both of them removed, there is not much choice (unless you are so close to menopause that you are willing to take it a little earlier than expected). Also, a woman will loose up to 20&#37; of her bone mass during the first five years of menopause and you need to be prepared to protect yourself against this. Osteoporosis is not something you want to have to deal with if possible.

All the best.

Last edited by Mod-S4; 08-01-2008 at 08:24 PM. Reason: Off topic. Please let the original poster have her situation discussed here. Thanks.

 
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