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New & Scared...Need Help! New & Scared...Need Help!

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Unread 10-16-2003, 05:57 PM
New & Scared...Need Help!

I'm 28 and have no children. In 2000 I had a laproscopic to remove a kiwi size ovarian cyst that the docs did not find. 2 years later in Feb. 2002 after not being able to urinate, doctors realized that kiwi sized growth in 2000 was in fact there, but was not ovarian in nature, but retroperitoneal. So I underwent a full surgery w/a midline incision to remove a 7lb retroverted peritoneal mucinous cystedenoma that was benign. They did not have to do a hysterectomy after all. However, the doctors told me that it was very probable that this would come back again.

At the time I was so glad that it was over with I just moved on with my life. I also changed medical insurance, so I had no way of following up w/the same doctors on treatment. Strange enough and I guess unrelated, I was diagnosed with Tethered Spinal Cord Syndrome in May 2003 and underwent a Lamenectomy and Tethered Cord Release of L4&5.

For the past few months I've been recovering from back surgery and recently got back on my feet and went to a gynecologic appt
The doc felt palpable masses in the vaginal and rectal area and sent me for an MRI this week. What's so strange is I just had a pelvic MRI 6mos ago and nothing was there! Now there are all of these "multi-nodular masses" connected to my vaginal and rectal walls. He said they extend the entire length of both walls on the right side and a golf ball size growth near my bladder.

I've been referred to a Gynecological Oncologist AGAIN! But, they can't get me in until November 5th! I'm just sitting here waiting while these masses continue to grow inside me. I'm wondering will I keep having surgeries every year? Will this surgery result in a hysterectomy? Will it be cancer this time?

I had to resign from my job because of my back surgery and I'm finally recovering from that. I was just getting back on my feet. I've only been in my relationship 2 years and have already had 2 surgeries going on my third. I'm too young to have all these problems. I don't know what to do. I don't go anywhere or do anything and I'm so depressed. I'm literally at the end of my rope. Any advice would be a God-send!
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Unread 10-16-2003, 06:41 PM
New & Scared...Need Help!


I had 5 surgeries within the first 3-1/2 years my husband and I were together. He is definitely a man who loves me, that's for sure. And, I definitely know what you mean about wondering if you'll ever go without having to have surgery!

The only advice I have, is to keep the faith that everything will work out fine - you mentioned "God"send, so I'm going on the assumption that you know Him. He will not put on us what we cannot bear.

I had just had some colon surgery, when approx. 5 weeks later I went to see a specialist because an ear infection wasn't clearing up. He told that me matter of factly that I had colesteatoma in my mastoid (base of the skull behind the ear), and if I didn't have it removed I would have a stroke and then die. Yes, he was that blunt with me. I was only 34 years old. He thought that we could wait a good 6 months for the surgery but I wanted it done right away. Good thing we did, because after 4 hours of micro-surgery he said that it was only 2mm away from my brain! He removed a good chunk of bone from my skull - gross, I know. I lost 85% of my hearing for 6 months while we waited to see if the disease came back, then we went back in and he hooked up some little wires, etc., and nearly all my hearing was restored. Believe me, I have an even greater appreciation for hearing.

I've had several "female" problems since I first began menstruating, several colonoscopies, and now I'm FINALLY going to get rid of the only REAL problems in my life by having my LSH on 11/6/03!

So, we all have our crosses to bear, but as you see, everything was "found" in time. We may never know "WHY," but I know there IS a reason for going through everything that we do.

Try to be thankful (as difficult as it is) that at least the things that have been diagnosed have not been malignant, and that they have been "found" in time. I will pray for you and keep my faith that everything will work out fine. Easy for me to say, but I genuinely care.
Unread 10-16-2003, 08:35 PM
New & Scared...Need Help!

s Mauibabe

I am sorry to read of all you have been through. And I agree, you are too darn young. Hopefully these masses will be benign also.
I checked and see you live in the San Francisco area. Does your current insurance limit which gyn onc you see? If not, there are quite a few gyn/oncs in your area. Could you call and see if perhaps another could see you sooner? I know in my own situation I called two cancer centers in Phila and went where I could be seen the soonest.
The waiting is just soooo darn hard.
You are in my thoughts and prayers.
Please stay in touch.

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Unread 10-17-2003, 01:35 AM
meee too

Oh hun, I'm so sorry for what you have gone through and my heart really goes out to you. Poor you!!!! You can get through this hun.

I know the waiting is horrible. I have been treated for vaginal cancer and I remember waiting for the treatment to start, waiting for a next appt.... it always seemed so long. So long to wait. I had seem my gyn for a checkup last January 2002 and they found nothing, then this year in April, they found a tumor on the canal wall. I just wanted it out. I was like you and felt it was just growing and growing.... like some sort of alien. Even though the doctors said it had taken a long time to grow to the size it was, the seconds to me that I had to live with this, were almost unbearable. For me, I worked all the way through my diagnosis, and treatment (including chemo and radiation) I was so afriad to let my guard down for one moment.... I know if I would have stayed home, I would have been a total basket case. I was always and am always ready to cry... feel like some sobby old woman.. lol. Working really helped. I know that you can't work right now, but I can't stress enough the importance of keeping busy with something, even if it's little things, things that occupy your mind, this will help keep depression away and keep you much healthier.

Once again, my heart goes out to you, many hugs are sent you way


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