HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.
Our community is filled with women who have been through the
Hysterectomy experience providing both advice and support from our active members and moderators.
HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.
With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.
You are not alone. The HysterSisters are here for you. Join us today!
|
|
Questions About Options
|
04-20-2002, 02:51 PM
|
Guest
|
|
|
|
Questions About Options
Dear Sisters,
First, I’d like to say THANK YOU to everyone involved in this site, from those who started it, to those who are maintaining it now, and all those who are participating in it. It is a phenomenal forum!
My BACKGROUND: After seven years of major discomfort (mega pain, bleeding, bladder pressure, etc.), it was finally discovered, during an exploratory laparoscopy in 1991, that I have fibroids (one was the size of a grapefruit) on the back side of my uterus, and moderate endometriosis. I had a six-month course of Lupron, which shrunk the fibroids, including the large one down to the size of a walnut. (Except for some mild bone/joint pain, those six months on Lupron were the best six months I’ve had in the last 18 years!) I then began BC pills to try to keep the fibroids small, but over the years have had to keep switching pills because of developing side effects that were as bad as the original symptoms. The last drug I tried was Provera, but it didn’t work for me, either, and I’m just now feeling back to “normal” from being on that. I’ve decided that these hormone treatments are not for me, and I’m not currently on anything.
CURRENT STATUS: I now have really bad right-side ovulation pain mid-month, such that none of the OTC pain relievers even touch the pain, and the only comfort I get is if I lie down on my left side. That will make the pain ease off a bit, but the minute I sit or stand back up, the pain comes back full-blown within two minutes. (It makes it difficult to work, to say the least, and then wipes me out for a couple of days afterward, too, as far as just dealing with this pain.) But then nothing has shown up on the ultrasound exam (like a cyst). I’m going to try to have an ultrasound done the next time I’m actually having the pain, to see if something does show then.
At my last ultrasound six months ago, the fibroids were still reduced, but during my periods, I am having heavier and heavier bleeding each month, bad abdominal pain (in addition to what I consider “normal” cramps), and bladder pressure (this starts building up before my period). I also have migraines, moderate back pain, and sinus pain during my period, and breast tenderness before, etc. etc. etc.
I am 42 years old, have not had children (by choice), and do not intend to have any in the future.
OPTIONS 1 and 2: I am considering (1) endometrial excision/ablation (“EA”), or (2) laparoscopic supracervical hysterectomy (“LSCH”).
OPTION 1. The EA will address the heavy bleeding and cramping, for obvious reasons, and probably the migraines, because I understand this procedure removes the glands that are found in the walls of the uterus, and that this helps stop some of the hormone fluctuations, which can be the cause of these estrogen-withdrawal headaches.
QUESTIONS regarding Option 1:
A. Does anyone have any information/experience on whether the EA would help keep the fibroids (and the related pain, pressure on the bladder) reduced?
B. What effect, if any, might it have on ovulation (and ovulation pain)?
C. If the endometrium does not grow back (which I understand there is a chance that it can), might the endometriosis in the abdominal cavity calm down? Or not?
OPTION 2. A hysterectomy is my preferred option, as it is the most “guaranteed” solution to these difficulties. With the ovulation pain (and my age), I would choose to have the ovaries and tubes removed, along with the uterus, but leave the cervix to assist with the structure of things “down there” (and continue, of course, to have yearly PAPs). Because of not having been pregnant, I understand that a laparoscopically-assisted vaginal hysterectomy (LAVH) is not recommended. That leaves me with either a traditional abdominal hysterectomy (one large incision and six weeks of recovery) or this newer LSCH method (four small incisions and closer to two weeks of recovery, hopefully).
QUESTIONS regarding Option 2:
A. Has anyone had an LSCH done, and if so, how’d it go?
B. I understand the doctor uses a tool called a morcellerator (or something like that) to cut small pieces off of the uterus and other stuff being removed, and I assume those pieces get vacuumed out. Is this correct?
C. With the smaller incisions, I’m wondering if it’s more difficult to get at everything and clean everything up. Does it kind of make more of a mess inside, compared to a large incision with a traditional hyster, where they can just make a few bigger cuts and get everything out more cleanly? I’m wondering about even microscopic pieces of the stuff still being in there and maybe causing problems, or does it just get reabsorbed by the body and go away? (Now I’m beginning to obsess, right?)
Well, thank you all again for sharing your experiences, and for any information you can give me on all this. It’s wonderful to have all the choices that we now have, but it makes it more confusing, too. This is a great place to do some information-gathering, to help us each come to decisions (with our health-care providers) about what our own best paths may be. Thanks again.
Theresa
|
Sponsored Links
|
Advertisement
|
|
|
04-20-2002, 03:14 PM
|
HysterSister
|
|
Posts: 3,391
Hysterectomy: November 29th, 2001
Surgery Type: TAH
Ovaries: Removed both
|
|
Questions About Options
Hi Theresa! Glad you found us.
I'll try to answer some of your questions. First of all, the fact that you had (and may still have) endometriosis makes me wonder if that is causing some of your ovary pain. My right ovary was stuck to the right ureter and all of this was stuck to the peritoneum. I had pain in that ovary frequently.
I never had EA done, so can't really answer too many of your questions about that. However, it is my understanding that this procedure will not take care of the endo. Many docs believe that endo is "fed" by estrogen. As long as you have ovaries that are producing estrogen, the endo in the abdominal cavity can continue to cause problems.
Morcellator - yes, this takes "bites" of the uterus and/or fibroids and then they are removed. Not sure if it is via suction or some other method.
LSCH - most laparoscopic procedures have shorter recovery periods. Last summer I had a lap myomectomy to have two large fibroids removed. The surgery was done as outpatient, I only missed one week of work. Not the same as LSCH, but there are some similarities.
LSCH versus TAH. I had a TAH/BSO because I had stage 4 endo (discovered during the lap myomectomy last summer). The TAH gives the surgeons a much better opening to check everything out inside. This was necessary in my case because my gyn already knew I had really bad endo around my colon, in addition to the ovary/ureter problem. However, I know of other ladies who had endo and their hysts were performed laparoscopically. There are some highly skilled surgeons who seem to get great results for their patients via lap ... the key is making sure that your surgeon is one of those who is highly skilled. I was not thrilled that I had to have a TAH, versus a lap hyst, but I understood why and believe this really was best for my situation. My gyn was assisted by a gyn oncologist who did peritoneal stripping to remove all the endo. I also had a urologist there who put stents in my ureters so that my gyn could be sure he could "find" them in the mess I had inside. Bottom line: no complications for me, I'm five months post op and doing great.
If I can help with any more questions, let me know. I know these decisions are tough. We'll do our best to provide support, whatever you decide.
Beth
|
|
04-20-2002, 09:54 PM
|
|
HysterSister
|
|
Posts: 1,707
Hysterectomy: March 8th, 2001
Surgery Type: TLH
Ovaries: Kept 1 or both
|
|
Questions About Options
I'll pipe up with a few more answers, though I had laparoscopic hyst. My surgeon does not do supracervical hyst laparoscopically, and since my cervix was always kind of tender I wanted to get rid of it anyway. My uterus was removed through the vagina, even though I have not had kids. This is called TLH (total laparoscopic hysterectomy) and all the surgery and suturing is done through the lap incisions.
In LCSH, they cut the uterus free, pop it into a little bag, and stick the morcellator in the bag with it (think tiny hand blender) and grind it up. Then the bag with the ground-up uterus in it can be pulled out through one of the laparoscopic incisions.
How good a surgery you can get laparoscopically depends on what all is going on in there but also very heavily on the skill of the surgeon. I had the same surgeon who did my last lap, and things went fine for me. If youve seen the video from you laparoscopy you can see that they really can see a lot in there. It's all a question of whether they can get to all the parts of you they need to get to for your particular surgery.
Be aware that endometriosis can return even after hysterectomy and even if you have your ovaries removed. It may not, but don't go into this major surgery thinking it will be a slam dunk for you. Make sure you have the best surgeon to remove all signs of endo during your surgery; don't count on having it "die off" afterwards.
Good luck with your decision. I love that you're taking the time to ask a lot of questions.
|
Sponsored Links
|
Advertisement
|
|
|
04-22-2002, 09:05 PM
|
Guest
|
|
|
|
Questions About Options
Thanks for responding to my questions. I really value your experiences and knowledge.
Beth, I’m wondering about the endo causing the ovary pain, too. And thanks for the info about estrogen and endo. I think I was told about that before, but in going through all this, and talking with different health care professionals, I’ve received so much info, I don’t retain it all. (I’m going to begin a list of questions, on paper, and then write down all the info I receive at my appointments from here on out!!!) I’m so glad you had such a good result. It sounds like you had some major challenges to be addressed surgically, and I understand completely about why the TAH was recommended for you. I’m wondering about that, too; if there’s endo stuck to a lot of places, it’s got to be more difficult to get to it all through lap. But what you say about the skill of the surgeon is right on, and I’m going to do some more research on the doctor I’m seeing now before making my decision. Again, I’m so glad you have had such a great result!
Denise, thank you so much, too, for sharing with me about how that little buzz-saw really works. I never knew about putting it in the bag first, chopping it up, and then pulling it out. Wow! Who thinks these things up? Whoever it was, I’m sure glad, ‘cause it gives us more options. Anyway, thanks also for the additional info on endo. You are absolutely right about cleaning as much of it out as possible. And thanks for letting me know that the vaginal hyst IS an option even if you haven’t had kids. I need to ask more questions of my doc about that, since I was under the impression it wasn’t an option.
I spoke with another lady yesterday who had EA and lap surgery at the same time. She had real heaving bleeding, migraines and fibroids. They did the EA to get rid of the bleeding, and then also went in through lap incisions and removed fibroids from her uterus and tied her tubes. She had one more teeny period and has had none since, no more migraines, and is really, really happy with her results. I was amazed to hear about this option, too.
I’ve been approaching this with the attitude of, if I’m going to have major surgery anyway, let’s just take it all out and be done with it. But there is no going back, after that, and you can still have lots of difficulties after a complete hyst, so maybe it is worth trying a not-so-drastic-step first.
Also, on another posting, someone was talking about copying a list of questions off of this web site to take with her to the doctor. Is there an actual list of questions available to use, as needed? It would be very helpful to me if there is such a list, as I always feel like there are some basic things I should be asking about, but I can never think of them on my own. Let me know, if you know.
Thanks again for your help. I still can’t believe this web site exists! What a gold mine.
|
|
04-22-2002, 09:20 PM
|
|
HysterSister
|
|
Posts: 1,707
Hysterectomy: March 8th, 2001
Surgery Type: TLH
Ovaries: Kept 1 or both
|
|
Questions About Options
Go to the Hystersisters front page, scroll down to Ladies in Waiting, and choose PreOp appointment questions for a start. Good luck with your decision. I agree it's wise to be cautious. You can't put it all back later if you decide it was a bad idea!
|
|
04-23-2002, 04:10 PM
|
HysterSister
|
|
Posts: 3,391
Hysterectomy: November 29th, 2001
Surgery Type: TAH
Ovaries: Removed both
|
|
Questions About Options
Lafngrl:
Here is the link for the list of questions on the Home page:
https://www.hystersisters.com/questions.php
Beth
|
|
04-25-2002, 09:41 AM
|
Guest
|
|
|
|
Questions About Options
Thank you again for your help. I found the list, and it's very helpful. It's been pretty crazy here at work this week, so I'd better get back to it. I'll be in touch later. Thanks again!
|
|
Similar Threads
|
From This Forum |
From Other Forums |
4 Replies, Last Reply 10-20-2010, Started By LucyLouBenn 5 Replies, Last Reply 04-19-2010, Started By buckeye67 1 Reply, Last Reply 03-30-2010, Started By onelindell3 5 Replies, Last Reply 05-15-2009, Started By Spamee 4 Replies, Last Reply 03-15-2008, Started By minnad 1 Reply, Last Reply 02-19-2008, Started By jlync1 10 Replies, Last Reply 10-02-2007, Started By lindsayjen 10 Replies, Last Reply 07-19-2007, Started By Fairylite 2 Replies, Last Reply 01-06-2006, Started By sdeleve 1 Reply, Last Reply 07-07-2005, Started By lilyflower 4 Replies, Last Reply 01-12-2005, Started By QueenMarsha 2 Replies, Last Reply 04-16-2004, Started By 4x4ski |
4 Replies, No Uterus - No Ovaries - Yes HRT - Surgical Menopause 13 Replies, Preparing for Hysterectomy (pre hysterectomy) 2 Replies, No Uterus - No Ovaries - Yes HRT - Surgical Menopause 6 Replies, Cancer Concerns - GYN 4 Replies, Hysterectomy Recovery (post hysterectomy) 5 Replies, Preparing for Hysterectomy (pre hysterectomy) 1 Reply, Preparing for Hysterectomy (pre hysterectomy) 11 Replies, No Uterus - No Ovaries - No Hormones - Managing Menopause |
|
Advertisement
Hysterectomy News
TODAY'S EVENTS
Calendar -
Hysterectomies -
Birthdays
Request Information
I am a HysterSister
Your Hysterectomy Date
$vbulletin->featuredvideos is not an array!
Advertisement
Advertisement
|