Lavh? Operation In General, Just Not Sure

Hi there,
I haven't posted my story before, but I've been checking this site for a month or so.......
Here's my story, and if anyone has a similar one I'd really like to hear from you. I know it is a long text, but I figure if I want to talk to someone with similar problems, I need to give the details.

I'm Canadian, living in Italy. I'll be 45 in July. About 3-4 years ago my periods started changing - not irregular but "clotty" - as I live in Italy it took me a long time to get around to visiting a gyn. at that time she did a manual internal and didn't make any comments on fibroids - at about the same time I was diagnosed with hypothyroidism and after what seemed like forever finally got on medication and after messing about for almost a year, seems like I have the right medication. But the periods continued to be heavier than before and the clots were getting a lot bigger and messier.
In Feb 2002 I went to a new gyn. (British, but still here in Italy) - she did an ultra sound and said I had a couple of small fibroids that could be causing the heavy bleeding and clotting. She did some blood tests and then suggested farlutal, which is MEDROXYPROGESTERONE ACETATE (DEPO-PROVERA, FARLUTAL, PROVERA). I took it from the end of April and in September I told her I didn't want to take it any more because I felt too crabby and bloated. She said, ok, let's see. Well, September's period was ok - October's was a nightmare - I had hemmoragging - soaking through everything in 15 minutes for about 18 hours!!!
I went to hospital (my first ride in an ambulance). That was Saturday night. they kept me until Monday morning - mostly because they wanted to observe and do another ultrasound.
On my arrival at the hospital I saw 1 dr, who said "this uterus is full of fibroids" and within 15 minutes was suggesting that a hysterectomy was in my future. The next morning I saw another dr, who said, yes, full of fibroids, you'll probably have a hysterectomy, but given your age, let's see if we can put it off for a while yet. On Monday the dr who did the ultra sound took one look and said "there's no hope for this uterus" - which not only upset me hugely, but also infuriated me. When I asked him if he was sure there was no hope, he said, "what's the matter? are you so attached to your uterus?" (my husband said I should have grabbed his testicles and ask just how attached to them he was!!)
I went back to my own gyn, and she agreed we should try to hold off - I went back on the farlutal and nervously awaited the next periods....... everything was fine until April, when I had to leave work and miss one day because of heavy bleeding (the bleeding "only" went for about six hours but there was so much I was drained (pardon the pun, not intended)......
back to the dr, who suggests that since the medicine doesn't seem to be helping, maybe I want to think about the hysterectomy. She can't do surgery because being Brit she can only operate in private hospitals and I don't have insurance for that. She has recommended another dr, who is the head of gyn at on of the hospitals for obst. & gyn in Milan. I have an appointment to see him on the 27th of May.
I'm not in a lot of pain, though I can say that I sometimes don't feel comfortable. The really unmanageable bleeding has happened twice.... (right now I'm actually on "the pill" because I have a hugely important diploma exam coming up and I'm postponing my period until after the exam.--- I know this is not a great idea, because the pill has estrogen which is feeding the fibroids, but I can't afford to miss this exam and it is only for 2 monts total). Very recently I've found out I also have a polyp on my cervix which has caused spotting between periods, after bowel movements, and after sex. There is something (maybe the polyp) that is causing pain during sex right now - sort of a scratchy scrapey feeling which is quite unpleasant.

Ok, I've really gone on a long time about this.... my Dr. has suggested that possibly a LAVH would be a good option for me
but I have to see the dr who would be doing the surgery to see what he thinks.

My mom had a hysterectomy at age 37 for dysfunctional bleeding. Her sister had fibroids diagnosed at 44, and extremely heavy periods . She had one fibroid removed and then another removed (both very large, like grapefruit) - before she finally decided (at age 56) to have surgery.

I know fibroids are not predictable - maybe mine will grow (they have been - at first they were about 1.7cm now some are 3.6 cm)
maybe they will stop - who knows.

I read about women who constantly have super heavy periods and are in a lot of pain, and I wonder if I "warrant" the operation?

I'm considering it now for a couple of reasons:
1. I have a lot of difficulty coping with the unpredictability of the heavy flow - will I end up in hospital or missing work again? I work freelance, so if I'm sick too bad - no income and unhappy clients. (though so far they've been really supportive).
2. I teach, so the timing is good - I could have surgery mid July and go back to work mid September.....

I'm afraid of surgery (normal, I know)
I have qualms about losing body parts (normal)
I fear they will take my ovaries (no reason to as far as I know, but it is a fear).
I have other fears too, but the difficult thing right now is making a decision.
If anyone has any comments or suggestions, I'd really be glad to hear from you.
thank you
C.

Hello!
Now that you have written your story, I hope you have re-read it and see it really answers your own questions--this is obviously not a normal way to live and how disrupted do you want your life to be for the next ten years?

I am 48 and just six weeks ago finally had the LAVH. I feel great, and I have no regrets. I have put it off for many years due to work, and my nearly 7 yr. old son was born with liver disease and needed a liver transplant--so I have been busy and never able to block out the weeks I needed for possible recovery time--not being sure which surgery I might end up having.

The first time I remember one of those spells of bleeding for about 4 out of 5 weeks was 1991...now it sounds so sad to say I have tolerated this problem for many years and prayed for menopause. I took medication that made me feel like an axe murderer. I sacrificed the intimacy in my marriage that I really was craving.

I had a couple of fibroids, not huge, but adenomyocis--and was still surprised when the dr. said my uterus was 12-14 week size. I had several of those hysteroscopes and was told I had some polypoid tissue...I feel like I should have bought stock in sanitary pads and napoxsen sodium tablets. I had years of bleeding, interfering with jobs, vacations, visits, pain--cramping, pain with sex, gained weight. It's been awful. Eight years ago I had endometriosis lasered out with a laparascopic assist and was able to get pregnant again. The dr. did not find any more this time!!!

I am looking forward to my new life without any of this misery. I think the laser surgery was more painful than the LAVH the first few days. I would say the 4-6 week recovery time was realistic...well the dr. told me she could still see sutures as of Friday and that I should wait 2 more weeks for sex and bubble bath. At 48 even wishful thinking wouldn't be getting another baby...I finally felt ready to make the decision. I want to be healthy, active, trimmer, feel good and enjoy my life--and continue to have a sex life. There was no sign of menopause so I wasn't hanging onto that hope. My dr. said the avg. age is 52, so I figured being above average (LOL!) I'd probably last til 55! I kept my ovaries, so HRT is not an issue.

The LAVH had first been discussed for me 6 years ago. I nursed my son the first year and didn't get a period back until he was 8 months old--and the misery came right back. I felt the same as you I didn't want to give up part of me. The dr. who did my LAVH mentioned myomectomy, but said it probably wouldn't stop the bleeding and probably wouldn't help the pain. That was before she told me how enlarged my uterus was--it would have been contraindicated anyway...I wanted the surgery that would do the most good. She couldn't guarantee she could do the LAVH until she tried, but I'm glad I had a woman dr. Actually, I'm thrilled she was able to do it vaginally and my ovaries looked healthy.

Good luck!
Mary W

Hi

It does come down to a quality of life issue - are you happy with things the way they are? There are risks with any surgery, and no guarantees that you won't have some problem after.

All I, or anyone here, can tell you is our experiences and let you make the decision from there. I haven't had any post op problems and first try my HRT worked, but that was me.

I also had fibroids, when they were diagnosed my DR put me on medroxyprogesteron (provera) 10days/mo. The hope was it would control the bleeding and we could try to make it to menopause, when supposedly they will shrink a little. I was a total B**** while I was taking it (for 2 1/2 years) and it got worse the longer I took - I referred to it as "Drug enhanced PMS". The moods swings, it was bad. I also over the years had had polyps removed from my cervix.

In Oct 2001 my period started and wouldn't stop. It would slow down like it was stopping, then take off again with major clots (that I could have named) and flooding. I started the Provera on schedule, again it slowed for a day or so, then was even worse than before. When I called the DR they sent me for a blood test, I was very anemic. A few days later when I saw the DR she said it was time, and I was more than ready. I practically skipped out of the office the day we scheduled surgery.

I am 15 months post op. I really didn't realize how bad I felt before. It takes time, but I have so much more energy and I want to do things like bike ride, and walk and play tennis. A few months after surgery one of my employees told me that I was like a different person (for the better).

So read as much as you can, visit the post op forum and see what some of the problems can be. Make a pro/con list. Talk about your concerns with your DR. Don't rush to make a decision. Be as sure as you can, cause once it's done it's done, there is no going back.

Best wishes!

I have a similar story but I chose to put off my surgery and try to get through menopause. I had debilitating cramps and heavier and heavier bleeding. Just to put this in perspective, I am chronically ill and was a high risk for surgery. However, I made it through menopause and everything was just fine. I thought I was home free. Three years later tumors were discovered on both ovaries (quite by accident) and I ended up having to have a hysterectomy anyway.

I don't have an answer for you, but I do think it's very important that you be certain about your decision. There is a lot to consider.

Good luck!

you know, reading through some of the stories here has only just made me realise what an awful lot of "abnormal" we put up with in the name of being "normal"....I've had years of heaving bleeding (from the age of 11) which I was told was 'normal', but after recently having laparoscopy, hysteroscopy and D&C at 33 have realised that it was anything but normal and totally disruptive (but hey, you live with it, right?).....and only recently have I found out that it was indicative of the adenomyosis that I have now been diagnosed with. I think we try to convince ourselves that we can cope, but we merely exist. My family is encouraging me towards surgery because they see more than me how disruptive the whole symptomology is.

here's to a new, improved you!

Hello again ladies,
thank you for all your input.
As Mary said, in a way I've answered my own questions haven't I? I think part of my difficulty is that I live in Italy and my family is all in Canada - my husband is wonderful, but it just isnt' the same as having endless heart to hearts with mom and sis.......

I'm making up a list of questions for the 27th - is there a checklist somewhere on this site of things to ask ?
I've found a lot of good information for what to expect - but most of you are from the US - and I KNOW things are done differently here even than in England which is a lot closer!

thanks a lot!
Cheryl