For the last two years I think I've tried everything possible for endo. I've taken Lupron injections, had 2 laps, and taken numerous types of birth control pills.
I have a doctor who is will to try as long as I want to try and avoid a hysterectomy. I just wonder if I doing myself and the people around me any favors by putting of something that will eventually have to happen.
How do you know when you've given it your all and it's time to have the surgery?
I didn't have endo, but did go through the ordeal of multiple large fibroids, an enlarged uterus, pain which started two weeks before my surgery from a twisted fibroid, and very heavy, constant bleeding. I finally said enough is enough when I started having to miss work because of the bleeding and got so anemic that I could barely function and ended up in the hospital with anemia-related complications.
For me, it was a quality of life issue. I was missing too much work because of my health problems and could barely function anymore. I just wanted my life back. I had tried Provera for the bleeding, but it didn't help at all. From my research I knew that in my case an edometrial ablation wasn't an option because of the fibroids. And I'd heard that with a myomectomy, the fibroids could grow back. I was through having children, my three are all in their 20's. So for me, the choice was easy - put an end to the pain, weakness, bleeding, and hugh tummy and get on with life.
You'll know when it's time. When you've tried all other options, and they don't work, and you want your life back - you'll know it's time to face the decision.
For me, it was the best decision I've ever made. Now, nine months later (today is my 9 month hysterversary), I feel like a new woman! I'm free from all that horrible stuff, once and for all!
I too have tried for the past two years to get past the pain of endo - I've done Lupron + Depo Provera, Syneral, and every birth control pill you can imagine. After 2 laps and more pain pills than a person should ever have to take, I have my surgery scheduled for April 29.
I've had a specialist and my former doc tell me they can't beleive my pain is related to endo - then 3 months later I had another lap in which they diagnosed stage 4 endo.
I got another opinion at a well-known university clinic and they concurred with my doc's opinion. I told myself I would have the surgery if this other doc agreed. At least that way I knew in my mind I checked everything out.
You come to a point where you figure it's got to be better on the other side of surgery since the current situation is unbearable and totally unfair.
I'm 30 with no children (only a beautiful dalmation puppy dog), and I'm ready to take this step after more tears than I can count.
You're doing the right things to figure out when - or if - a hyst is your answer. You're working closely with your doctor and you're asking women who've had similar experiences. Shashi's right, you'll know when it's time.
I, too, had endo, although it was undiagnosed until my surgery. What I DID know was that I was having terrible pain that triple doses of Motrin couldn't take the edge off of. I had many of the symptoms you're living with. Worst of all, my dread of my period had become a dark cloud over most of the rest of my life.
I had my hyst a few years ago and I still refer to it as my miracle surgery. But I was done having children and I did not have any feelings, as some women have, that losing my uterus was somehow losing a piece of my womanhood. Perhaps someone who DID have those kind of feelings will offer you some insight.
Trust your gut. And come to Hystersisters for support, whatever you decide. This site helped me enormously, both before and after my surgery. It's a wonderful community.
to be honest, I too go to a doctor who was weilling to do what ever I wanted. I don't know that I was in a position to make the choice that was truly appropriate for me, without having asked and almost prodded him for his advice. He was very reluctant to give it to me, but I felt that we have a good patient/doctor relationship and that he knew me as a person well enough to know I needed his professional guidance, yet he knew I would not base my decision solely on it.
While my surgery was to prevent further fibroids, I could have taken a less evasive path. With my doctor's opinion, and much soul searching, I new I was tired of the surgeries and that they had become temporary fixes to my main problem. I had been holding out in hopes of starting a family. The logical me discuss this with my sweetie and my doctor at the same time and we landed on "how likely is that given my history", and at that point my Doctor did not discourage our discussion. All this to say, I'm not sure you'll know when it's the right time ... just that if you are starting to wonder, or if someone else close to you starts to suggest it, then the time is probably close.
This is a hard decision to make. I also had endometriosus, for over 20 years. It caused infertility in me, but my husband also had a problem that made getting pregnant something we couldn't do. We were lucky and got to adopt our dear daughter when she was two yrs old, we got her when she was one and she'll be 16 next month. She's our gift from God, a blessing. I know the pain of infertility and endometriosus. It's very difficult to go through. I had some changes in my monthly cyclic pain - I started having more pain earlier on in my cycle and it was significant, even though I took lots of motrin. I saw a obgyn, had some tests done, found out I had some fibroids, rt. ovary and uterus were enlarged, so I was to the point of not wanting the pain anymore and my husband,doctor and I decided this was right for me. I had quite a bit going on inside of me and was glad to have done the surgery. I had endo, adenomysis(like endo inside the uterus/or a fibroid inside the uterus), fibroids - several, rt.ovary & uterus enlarged, a tube around one of my fallopian tubes and inflammation in my pelvic cavity, plus the monthly pain. I'd had 3 laparscopic surgeries previously for endo, so I was to the point to do something, especially since it'd been quite awhile since I'd had any treatment. I kind of figured, when I was younger, that some day, I'd probably need a hysterectomy because of the female problems I'd had. I'll be praying for you. Only you, your family and doctor can make that decision - you'll know when it's right. You can always get a second opinion, as well, or a third or fourth for that matter. I'll be praying for you and thinking of you. Please keep us posted on what happens with you = we care. Feel free to come into chat, as well. It's fun, a good way to vent, ask questions and get lots of support. God bless you.
this is my opinion;always get medical advice from a doctor
You'll know when you are ready. No doubt about it. I was ready after 6 years of taking birth control pill to control the 16 day flow which only lessened the flow, but not how often the flow came or when it came. I was allergic to pads because I wore them 24-7. Now I have no more bleeding at any time during the month, no more pads, no more pill induced migranes, no more remembering to take the stupid pill at the same time every stinkin' day, and no more $32 a month for the pill either. I can go swimming when I want. I can have sex whenever I wish. I don't have to worry about flowing on vacation or when staying in others houses with it. I can sleep in on Saturday and not set my alarm to take a pill. I'm free as I knew I was ready to be.
Hi. It's sad that we all have to meet under these circumstances, but wonderful that so many women can come together to help each other through all of this.
I do not have endo, but one nicely sized fibroid that causes excruciating pain at times and heavy bleeding. I decided on a hysterectomy as a quality of life issue. All other options for fibroids leave a chance that another or more could possibly grow again some day and for me, that is not an option. I am 32 with a daughter of my own and no plans to have more (also have a stepson). I do not want any more days in bed with pain. While I understand that every situation is different, when it comes down to it, it is your decision. What is best for you? Is it a quality of life decision for you? Is it tired of dealing with the whole issue? Is it posing any other health risks to you?
Continue voicing your concerns with your Dr. and don't be afraid to get second opinions.
By the way, if you don't mind my asking, what part of TN? N.E. TN here.
My prayers are with you and know that you will make the right decision for you.
I am 35 and have had severe pain from endo since 12. I also tried so many things, and I just got to the point where I just couldn't take it ruling my life anymore. I have a fab doctor who didn't suggest it to me, but when I said I wanted a hyter, she said she thought it was the right decision. She said that her patients who had them b/c of their own decisions did very well. My situation is I am married with a perfect adopted 20 month old, and I came to terms 2 years ago with not ever becoming pregnant. Now it's just a quality of life issue. If it isn't cancer related, I believe that it is a personal choice. I also believe that if someone (like a doctor) hasn't had excruciating periods, he or she may not get how debilitating it is. You'll know when it's right for you.
(((Hugs))) to you. I know this is a tough decision to make. You've been through alot, so it sounds. I,too,had endo for over 20 yrs., plus my husband had a problem with fertility, as well. We went to 2 local doctors, then to a bigger city clinic for 2-3 years. I had 3 lap surgeries done, trying to get pregnant, which never did happen. We were on an adoption list for about 6 years and finally got a girl, who was just over a year old, got to adopt her when she was 2, she'll be 16 in march. She's our gift from God. It's very difficult to go through infertility, then have to face this kind of surgery, even when you've resolved those issues. I had other problems inside, as well, which they saw once they got in there (fibroids, adenomyosis, cyst around a fallopian tube,inflammation in pelvic cavity,endo). I had a total abdominal hysterectomy, both tubes and ovaries removed, plus my cervix. I use a hormone patch, plus progesterone cream. I'm so glad that part of life is over - I had light periods, but painful ones. What got me to the doctor was a change in pain level and it came at a different time of month, so I got checked, the doctor and I had a few tests done and decided together on a course of action, along with my family. I'm now 7 months postop, doing great. I'll be thinking of you, Stephanie, praying for you,too. God bless you. I'm glad you have your child, though. It makes this an easier decision. There are some good places to read on this site about stuff - aching hearts (others with sad stories, as well), the hormone jungle (good information on hormone replacement), and there are sites here and on the internet, I believe, that deal with endometriosus - people's stories and information. Best wishes to you. Please post often, keep us updated on what you decide and what's going on with you. Always write down questions to take with you to the doctor, so you ask everything you want to and don't forget. Chat room is fun,too,lots of support,good to talk to other women who've been there, done that. I'm interested in you and would like to know what happens with you, so please post again soon.
this is my opinion;always get medical advice from a doctor