Will I or won't I??

This is my second post to this site. I began the other night and now that I've read more and more of your posts, here is where I stand.

My mother had a partial back in the mid to late '80s due to cysts. Then my sister just had a complete 4 years ago due to severe endo. She tried freeze therapy prior to surgery with not luck. My dr. says cysts don't run in families, but endo does.

Last Tuesday I went to my dr. after not seeing her for 2 years (too busy with college and my family). She came in, sat down, and I began to explain to her that her suggestion of "take massive doses of ibuprofin, but no more than 2400 mg at one time beginning a week prior to" my period is not and has not been working for the pain I've been having. She cut me off, and with a blank look said, "Do you want a hysterectomy? If you do just say so and we'll do it." To which I replied, "Well, it won't hurt my feelings any."

The pain, you ask. Well, it begins in my abdomen and will either move up my torso and make me feel like I'm in labor, or travel down thru my hips and eventually twist itself around my leg(s) to the point that I cannot walk or have difficulty walking. The pain is also severe enough at times that I can actually tell if it is plain old cramps or my body telling me there is a huge blood clot that it needs to get rid off. (This is one of the issues that I didn't get to discuss.) I have had my period since I was 12 and each month of each year it has progressively gotten heavier and more painful.

At this time, I had litterally been thrown into shock because I always figured I'd have to fight my dr for this surgery. Now, mind you I had other issues I wanted to discuss with my dr that never got covered because she jumped off her stool and went to get her nurse for the exam. At which time she also instructed her staff to begin precert for the surgery.

I have been scheduled for an ultrasound Monday afternoon, lab work, x-rays and a pre-op visit with my dr. on the 21st AND! my surgery has already been precertified by my insurance and is to be on March 1. Now that the shock has worn off, call me crazy, but isn't this a bit fast? Shouldn't we be trying to find the cause of the pain I'm having before we start taking stuff out and at my age?!

Since reading posts here I have since been asking myself what about the other issues and what are other options. So I'm going to find out and then make my decision. I feel I still have time to cancel and if anything, I've already got a date (and I think) if need be we can use it for other procedures that aren't as drastic. I'm only 1 week from being 30 and have no other complaints other than severe pain and loss of sex drive. Having a period I can deal with, it's the other that I cannot.

I have a busy life (I am just beginning a new career and I am committed to my volunteer work with both Boy and Girl Scouts) and otherwise have no medical problems or complaints.

Hi lostyankee,
I don't really have any answers for you but I just wanted to tell you that I'm here to listen.
Only you can decide what is right for you, listen to your body and do alot of research. You still have time to look up other alternatives and there's nothing that says that you have to have this done on March 1st, if you are not ready you can put it off until you are ready, until you know that it's right for you. Get a second opinion about it and see what happens.
Most of all listen to yourself and don't let your Dr push you into something that you are not ready for. Take your time, explore your options and then make a decision about the hyst.
Best wishes,
Tammy

Hi LostYankee,

First off...you sound like a brave young lady in the way you are dealing with things.

I agree with you. In my opinion, it sounds like your Dr. is moving "faster" then feels comfortable for you. How about having the tests FIRST then "deciding" on a hyst?? Or have you looked into alternate methods such as an Endometrail Ablation??

I can suggest getting a 2nd or even a 3rd opinion. I was 46 when I was diagnosed with two large fibroids. Scared me to death!! My 1st Dr wanted to do a TAH (Total Abdominal Hysterectomy) and my 2nd Dr. wanted to do a LSH, a less invasive hyst, after I did (3) months of lupron shots to shrink my fibroids enough for surgery. The point of my story?? Drs can give a "very" different diagnosis of how to proceed.

Best wishes. In the end, a hyst is a very personal choice and you are the final answer on it.

Mary

Thank you both for your support. Like I said, I went Tuesday and the shock finally wore off Friday.

My mother-in-law had one when she was in her early 20s and because of that my husband seems to not have a big problem with the way my doctor responded. He also said that unless her "horomones are off" you never know she's had a hyst. Although he has said he supports my decision, what ever it may be, and that he'll always love me. He also says his biggest problems are my libido (surprise, surprise) and the amount of pain I go through.

I have mentioned to my dr before, I know at least half dozen times, that my sister had endo and she almost acted like I was saying, "She has one so I want one too." Which is not the case. I simply want to live without the pain, which has just gotten unbearable in the last 5 years. I don't know if I can stand it if it gets much worse.

Hi LostYankee,

In response to your question about a post-op libido...I might suggest you research the "ovaries" on H.S. As I mentioned, I was 46 when I had my hyst and I opted to keep my ovaries since I was a candidate. Ovaries are integrally involved with the libido since they secrete hormones that help with the sex drive and also help with the bones, skin, and hair, etc.

You are a younger woman and probably 20 years out from menopause. If you decide on a hyst down the road, keeping your ovaries might be an option instead of surgical menopause. I also opted to keep my cervix with my type of surgery. My Dr. said that the cervix helps with future pelvic support and with sex.

You can get pros and cons on keeping the ovaries and cervix. Just do all the research you can and you will make the right decision for yourself. Trust your "inner" instincts.

Mary

HI Lostyankee26 to Hystersisters

I'm very happy you have found us here to help you with your options. We have some great resouces that might help you while you are researching your alternatives.

I agree that it sounds as if your DR. is moving alittle faster than you seem comfortable with. In my opinion if there is not a diagnosis of your pain then you are not sure what options are available to you.

If your doctor is suspecting endometriosis, then it should be properly diagnosed because there are more precautions women need to use when they are dealing with endo. I also wanted to mention that a hysterectomy is not always a cure for endo. There are many, many women here that thought a hysterectomy would cure their endo but unfortunately that is not always the true

I have read that the only accurate way to diagnose endo is through a laproscopy. They have to actually go inside and take a look around to see if it is present. It does not usually show up on an ultrasound. Sometimes when the DR. is doing the laproscopy they are able to remove enough of the endo to provide some relief from the pain.

If you do discover that you have endo, then there are options available that may help you find the much needed relief from your monthly pain.

Many studies show that woman who undergo surgical excision of the Endo gain the best long-term relief.

There ia also progesterone therapy that has helped many women keep their endo under control.

We have many wonderful articles in our resource section that you might find helpful. You can find them here.
Endometriosis

It might also be helpful to go through some previous post and read some replies from women who have had endo and are looking for alternatives. If you go to the left side of any message board and type in the word endometriosis under "search this forum" you will be able to read some threads that have discussed options and alternatives.

I'm glad to see you are doing your research Please read as much as possible so that you will feel completely sure of any decision that you make. In my opinion you are still very young to have a hysterectomy when there might be something else that is available.

Well, I had the ultrasound today. The technician actually told me that she wasn't good at finding endo! I told her my story thus far and she just about passed out. Couldn't believe that my doctor had suggested such a drastic step without knowing what I'm actually dealing with. She urged me to get a second opinion, which I am thinking I will do (my insurance pays 100% for one).

I talked to my sister over the weekend (the one that is 4 yrs post-op yesterday) and she told me.... Get this! "YOU'RE READING TOO MUCH. IF YOUR DR IS OFFERING ONE TAKE HER UP ON IT." I couldn't believe it. I'm so mad at her for being so insensitive. Then she tells me that my mom, who sees the same dr I do and who is in her early 50s and who has already had a partial AND who has had a cyst big enough that her body has thought she's been pregnant, asked our/my dr for a hyst and she won't give her one! Now, I don't know about anyone else, but this really sent up red flags.

Looks like I'm on to another dr to be pocked and prodded some more to see if we can't find the source of my pain.

I thought you ladies would find this amusing. The following is an email exchange between myself and my doctor. I apologize for this being so long.

MY EMAIL:
After talking with Dr. XX on Tuesday last week and being completely thrown into shock when she bluntly offered to perform a hysterectomy, I have some concerns that I didn't get around to discussing.

Not only am I in pain during my period (it has, at times, been severe enough that I cannot walk or have difficulty with walking; although I have never been confined to bed with pain), I pass large numbers of blood clots and most of the time they are of similar size (large in my opinion) and frequency I noticed after having had each of my children. This may sound crazy but, I can tell by the intensity of the cramp/pain when it is the need to pass a blood clot or simply cramps. Each month/year since I began having a period it has gotten heavier and more painful and continues to do so, especially since having had my children. Could there be something causing this, other than endometreosis? Are there any other treatment options other than a hysterectomy? If not, what are the long-term risks after a hysterecotmy for someone my age? Your letter states "inpatient surgery",
how long would I be in the hospital? What is the typical complete recovery time for this surgery? (I understand it really does depend on each individual.) I also understand that we won't have any more information until after the ultrasound.

Since I'm talking about pain; I've been in pain since being in the office on Tuesday, I've never had this happen before after an exam.

Since Jan 1 I have had 3 occurrences of what felt to be hot flashes, about one each week until my period. Since my period, I have not had another one. By this I mean, I will feel nauseous for a few seconds, suddenly become dizzy and light headed, and then break-out into a cold sweat that is only relieved by removing all clothing and wiping my body with a cold cloth. Is this something to worry about?

Also, I continue to have a decreased desire for sex. This I don't
understand because I have always enjoyed having sex and wish to have that same desire back again. I have looked at the information for Avlimil and it seems like it might help my loss of desire. What is Dr. XX opinion of this "therapy"?

Are there any lifestyle changes that may improve these situations? Are there any other alternatives? I can live with having a period, it is the pain that is disrupting my life. I understand this is a major surgery and a major decision to make and I don't want to jump in to it if there are other options simply because I hate having a period. And even though I've always
said I'd do it if she'd agree to it.

DR. XX's REPLY:
Well, this is funny. In the past I have had patients get mad at me and leave my practise because I didn't offer them a hysterectomy - in fact, it's happened so often that if I get more than a few complaints from a patient about pain and cramping, I just go ahead and ask very frankly if they want a
hysterectomy. And if they do, we do one.

If you don't want one, we'll cancel it. Just let my staff know.

There are medical treatments for chronic pain and endometriosis.

First, you can take birth control pills. This might give you considerable relief, if you don't mind paying $30+ a month for it.

Or we can put you on depoprovera and stop your periods completely. This has a one in three chance of causing up to 60 pounds in weight gain, as well as depression and facial hair as side effects. Also, you'll lose bone mass.

I can put you on various very very expensive treatments that induce an artificial menopause, but if you don't like weight gain and facial hair and hot flashes, you aren't going to like these treatments either. Also, you'll lose bone mass and get osteoporosis.

The long term risks of hysterectomy are simply that you will have a scar on your tummy and you won't be able to get pregnant ever again.

You would be in the hospital for 3 or 4 days.

I don't believe you are having hormonally related hot flushes. Every sweaty spell is not a hot flash and women with regular menses don't have hormonal hot flushes.

The main ingredient in Avlimil is various forms of pepper. I don't think it will help and it might hurt your stomach. At this time, the only known effective treatment for decreased libido is vigorous aerobic exercise. Join a fitness class and see what happens.

Let me know what you decide. Remember, you've been uncomfortable for a long time and it seems to be getting worse.


Best wishes,

Dr. XX


Can you believe this!?!?

I find that unbeleivable. I have gone through sooooooooo many different procedures to find out what could be wrong. At this point I welcome a LSH but I still have a fears about it. I received second options all through out and have no regrets about it. I would get a second or even third opinion. I have been diagnosed with endo since 16 have had 9 Laps 4 D/C 2 hysteroscopies, 1 ablation and numerous medications. lf I had to go through it all again I would because it could have worked. You never know until the procedure or medication is complete if it's going to work and I can say well I tried this or that first. You'll have a better understand of your options if you are informed on all of them prior to making an important decision. Personally it seemed to me that the doctor was pushing for the Hysto

I had to let you all know what is happening now.

I had my ultrasound on Monday this past week and by Friday I still had not heard from my dr. so I gave her a call. She took more than half the day to return my call.

Her receptionist told me that she had planned to talk to me about the results when I got back in the office, 2 weeks after having the test run. The receptionist then says, "I've got to ask, are you having the surgery done or are you still debating it?"

When the dr finally did call, she told me, "There are no cysts or tumors. However, your uterus is enlarged by a few centimeters and there is fluid (think she said around/surrounding) the uterus, both are consistant with endo. I really need to know if you are going to have this surgery. If you're not going to, please let Lois know so we can free up that time for someone else."

At this point I ask, yet again, is there ANYTHING less drastic that we can do about this? She continues to tell me, "We can only do the birth control, the depo shots, drug treatments or surgery."

Can you believe this woman?