endo and severe gut pains

Hi
I am new to the site, but not new to pain from endometriosis! I am seriously thinking about total hysterectomy and removal of ovaries as a last resort. The main problems(part from the pain of endo and feeling of pressure on all my pelvic organs) for me tends to be really painful guts and lots of wind. I also often feel ill and my joints ache. Has anyone else experienced this with endo? The quality fo my life is seriously impaired right now - I have tried cutting out wheat, dairy, sugar and coffee/alcohol, but nothing really helps.

I don't want to go through surgery only to find most of my symptoms remain.

Would love to hear other experiences, including positive surgery reports.

Thanks
CA

I had my hyst for endo (had ovaries removed, too), and have felt great ever since.

After the hyst, the only thing I had left that was "wrong with me" was ulcerative colitis - constant diarrhea and lots of wind. After going to both GI doc and colon surgeon (who wanted to give me a colostomy), I tried a naturopathic doctor. She put me on an allergy elimination diet, and the thing I was allergic to was corn. Once I removed corn from my diet, my digestion is pretty much normal.

I do react slightly to milk, pork and very high fibre foods, and I think sugar and caffeine make my hot flashes a little more prevalent. When I cut out everything but fish, chicken, fruit vegetables and rice (with only honey for sweetener), I was able to lower my estrogen replacement dosage quite a bit. Once I went back on the "regular" diet, minus corn, I get a mild hot flash (a warm flash?) about once a week now - absolutely tolerable.

I don't drink a lot of milk and I avoid pork now, but still use white sugar and drink tea. I tested coffee, and while it made it hard to sleep, my guts were happy with it.

Hi
Thanks for the reply. It si reassuring to know that the op works as does the diet. I used to have problems with diarrhoea, but it has imporved a great deal with the diet. Have you put on a lot of weight since having your ovaries removed? Everyone I speak to who has had the full operation say they find it impossible to lose weight after having ovaries removed - whether on HRT or not.
LOve
CA

I'm about 10-15 pounds heavier than I want to be right now, but that is more due to nearly complete inactivity for the last six months. I had a big flare of colitis in December, and it wasn't gone until I did the naturopath's diet about six weeks ago, plus severe depression at the same time, due to withdrawl from meds I was taking for the colitis that weren't working anymore.

In the last few weeks I've been much more active and have lost a few pounds without actually "dieting" ie. cutting back on food. I eat what I want (ice cream, cookies, etc in addition to a healthy diet) and exercise for fitness and health, not to lose weight.

To put the weight thing into perspective, in general I was fatter before my hyst than I was after. I find it easier to lose now because I am happy and active, where before I was in pain and my hormones were a mess.

Welcome to Hyster Sisters!

We have many Endometriosis Resources you may want to read through before you make your decision. One thing to keep in mind is that a hyst does not cure endo. In fact, we have an Endometriosis Support forum which was specifically started because post hyst women with endo were having issues and had no place where they could find support.

A hyst is a major, irreversible surgery so you want to be sure it is the right and best option for you.

For me, my pain is actually worse post hyst. Actually, I only had right sided "sensation" prior to my hyst and now I can have pain which lasts for weeks on end. I have found that the more my IBS is in control, the better I feel, so I do work with my gastroenterologist on this issue. Gas, cramps, pressure and bloating are big IBS symptoms for me that complicate the endo pain. And I find that if I have PMS (I don't every month) I have more IBS and endo problems.

If you do not have an endometriosis specialist you might want to see if you can find one prior to making your decision. You want a doctor who is very knowledgeable regarding endo and hormone issues so you might find a reproductive endocrinologist is a good choice. A second medical opinion is also wise.

When making the decision to have a hyst, you also need to make the decision about whether or not to keep your ovaries. With endo, this can be complicated as HRT may or may not be an option as the estrogen can feed any remaining endo.

In my case, we felt it was best for me to retain my ovaries based on my health, my family medical history, and my age. This may not be the right choice for you.

Learn all you can about endo, know your symptoms, seek as much medical advice as possible and make the best choice for you!