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Just wondering Just wondering

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Unread 07-27-2003, 08:37 AM
Just wondering

I'm kinda new to this site. I have really liked what I see so far. Everyone seems really supportive.

I was diagnosed almost 2 years ago with endo when I had my tubes tied. The doctor asked if I had painful periods or any other signs. How do you compare your pain with others? I knew I always had painful periods and went through alot of ibuprofen during that time of month, but I just figured I was a real weany. Anyway, in the last 18 months or so, we have tried various scripts for pain and hormones to try to make this better. He even told me about the Lupron (no thank you!). He told me that the side affects to the Lubron would be menopausal symptoms. I figure if I am going to have the symptoms, I might as well have the true menopause. I have a sister who had TVH almost 10 years ago for endo. I don't think I am in as much pain as she was. Anyway, I am wondering if I am being a real weany or what. I will be seeing my gyn tomorrow to discuss my options. I am leaning toward having a hysterectomy asap. I am totally tired of this and have talked to several other women who have gone through endo and have had hysterectomies. None that I have talked to are sorry that they did it. I am almost 39. How do I know if I am rushing into this? Being in this body and putting up with this makes me just want to get all that out and stop having this every month. Then I read the posts on this site and see where women have dealt with it for years before they have the surgery and I think I am just rushing into it. I guess when I think that it isn't going to get better and there is no cure for the endo, then I go back to wanting the surgery.

Any suggestions or comments?
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Unread 07-27-2003, 05:56 PM
Just wondering

Hi tclark

Endo is just such a nasty disease.

You ask about how to compare your pain to someone else's pain. This is a question I asked a lot too. I had a TAH/BSO a year and half ago, primarily due to severe stage 4 endo. I was 46 at the time of my surgery. My endo was diagnosed about six months prior to my hyst during a laparoscopic myomectomy for removal of fibroids. The fibroids had shown up on ultrasound and I really didn't want to have a hyst, so I opted for the myomectomy. I had a history of painful periods and had been passing very large clots during my periods. I also had lots of "belly" pain virtually all the time, but had been told this was irritable bowel syndrome about 15 years prior after a diagnostic laparoscopy to look for endo ... and a gyn who said I didn't have it.

It turns out the cause of my pain for many years was not IBS, and it wasn't the fibroids either ... it was endo that apparently was misdiagnosed. The pain had gotten progressively worse over the years, but I always told myself it was my intestines ... and I had developed a lot of coping strategies and a very high pain tolerance. (My gyn was pretty amazed at how bad the endo really was ... he was the one who told me I had a very high pain tolerance.) My coping strategies ... always bought pants with room to spare for swelling belly that occurred daily, heating pad, lots of evenings spent on the couch trying to stay calm (Lamaze training came in handy many times).

What I'm trying to say is that when you've experienced chronic pain for quite awhile, you do build up some kind of tolerance. Each of us has our own ways of coping and I suspect that you do too. I think the important thing here is to consider how this is impacting your life ... and is there danger of compromising other internal organs. My right ovary was stuck to the ureter and the entire mass was stuck to the inside wall of my abdomen ... I had stabbing pains when having a bm around the time of my period. I even had a colonoscopy done prior to my hyst just to make sure the endo had not already invaded my colon (it had not, thankfully).

Quality of life counts for a lot, in my book. It was hard for me to see how the debilitating pain had caused me to curtail my activites, little by little. But now, I can see very clearly how I had been dragging myself around for quite a few years. Life is so much better now ...

I do not think you are a "weany." One thing that really helped me see how the endo had taken over my life was to keep a daily pain and symptom diary. In August of 2001, prior to my hyst, I only had two days without pain or symptoms. It was a real eye-opener for me.

I know it's hard to make the hyst decision and of course, there are no guarantees that you'll be endo-free forever even after a hyst. I encourage you to keep reading, keep asking questions, and start to take stock of your pain and symptoms. Only you can decide when and if you are going to have a hyst. We'll do our best to provide support, whatever you decide.

Sending positive energy and hugs your way. I know how difficult this is.

Unread 07-28-2003, 07:30 AM
Just wondering

I think we can be too easily caught up in what other's are experiencing pain wise instead of listening to ourselves in determining how bad the pain really is. For years before having children I put up with crippling period pain and after my children were born although the period pain had diminished somewhat I had menorrhagia and didn't even realise it as everyone I spoke to would tell me of their rotten periods making me feel as though mine couldn't possibly be bad enough to worry about. It wasn't until severe anaemia very nearly took it's toll I actually spoke to the doctor about the length and amount of blood I lost every month - he was horrified.

My take on it is that if the pain is impacting on your life in such a way that your quality of life is diminished and you're living around each period then something has to be done. Pain is different for everyone and you're definitely not a weany in any way to be coping with that amount of pain every month.

(of course I'm not a doctor and you probably need to discuss it further with them to determine where you are on the pain scale)
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Unread 07-28-2003, 09:43 PM
Thank you!

I want to thank both of you for responding to my babbling. I went to the dr this afternoon and talked with him. DH went with me and was supportive as usual. I took a list of questions with me and we scheduled surgery for August 19. What I really loved about the doctor was that he admitted that he can't really relate to what we go through so he wouldn't dare try to talk a woman out of surgery like this. I have had friends who feel like male doctors put them off when it comes to things like this and he didn't do that.

Sure I am nervous about the surgery, but it is amazing what just scheduling it has done for my attitude. I feel much more light hearted knowing that in a month, I will be healing and getting better, not putting up with another month of this. Now I just have to go to work tomorrow and break the news to 2 bosses. The scheduling of the surgery isn't the best for them. It is the week classes start at the community college where I work and I am the only computer tech in the building.

I'll be in touch and let you all know how things go.

Thanks again!
Unread 07-29-2003, 07:12 PM
Just wondering

Hi Tina,

I'm glad to hear that you had a good visit with your doctor. That's great news. And you sound very relieved that you have made a decision to have the surgery.

I hope things went well today when you talked to your bosses. Keep us posted on how you are doing as you approach August 19th.


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