Questions re: Endometriosis

I had a procedure 3 years ago to help with my endometriosis! My doctor has decided to go ahead with the hysterectomy. I have read so many articles about endometriosis and so many times only the horrible cramps and heavy bleeding during the menstral cycle are mentioned. I do have both of those symptoms but more painful that that is during my ovulation! The pain is unbelievable for about a week. The lower back pain, constipation, headaches and the cramping. Almost like labor pains. I question the severity of my endometriosis because it doesn't effect me like most of the reports suggest. I was wondering if anyone out there has experienced worse pain during ovulation???? I think that I have a pretty high tolerance for pain so question how severe my endo really is? The doctor is concerned that it is adhering to my bladder, kidneys and intestines. The last lazer surgery I had removed adhesions from all of these areas.

Another question I have is regarding my bladder. I have not talked to my doctor about this, but when I go for my pre-op I plan to! For the past year after using the bathroom when I stand up I start leaking! I think I'm done when I'm sitting but as soon as I get up I start leaking again! Should I ask about having my bladder tucked up during my hysterectomy and is that another surgery I will need to go through????

I'm only 36 and I feel like I'm falling apart!

I know that the amount of pain that you have with endo is not directly associated with how bad your case is or what stage it is in. Some people (like me) have had almost no pain with it, but have more advanced stages of the disease. Other women have severe pain daily with only mild cases of the disease. Here is a web site that explains the staging. http://www.information-on-endometrio...diagnosis.php3

I hope this helps you.

O M G - I'm so glad to hear from you. I went to my doctor and told him that I knew exactly when I was ovulating because of the pain. It came 12/14 days before my period, and I had EXTREME lower back pain, constipation which gave me cramps all the way down to my legs, followed by diahorea, and when I was driving the slightest bump in the road could send me to tears. I had to sit on one bum cheek at work, and standing and sitting back down almost drove me into a faint.

When I told the nurses of the pain I had been going thru, they said it was probably worse even than I realise. That it had been growing worse and worse each year, and my tolerance was just growing with it. They said that if the pain I was experiencing was put on someone who had never had any period / labour pain before they would probably collapse.
It took me to collapse before the doctors finally took me seriously and started looking inside - even tho I had figured it out years before, but no one would believe me.

My endo was attached to my bladder and intestines. My ovaries were welded to my womb. After surgery and had hundreds of internal stitches where they had had to remove my womb and the endo.

But Hey. I'm thru it, and was back at work within 5 weeks. The relief was unbelievable. Re the leaking...mmmm My bladder is weak, but I've gone back to the old pelvic floor and it reallly has made a difference. (Either that or I've just gotten really good at squeezing the muscles when I sneeze).

take care. - I'm so pleased to read your posting - I felt like people thought I was mad when I said I suffered more during ovulation.

Dylan

Thank you! I'm glad I'm not alone! I will be so relieved when this is all over!

You sound like me.......I always knew when ovulating. I would often say "ouch."

During surgery, my endo was everywhere, on the bowel, bladder, etc. For one surgery, my bowel was adhered to the ovary.

As far as the "pee leakage" problem. I had that before surgery. Turns out, my uterus was holding my bladder "hostage." The bladder was behind the uterus. Fun stuff.

Good luck.

I'm in the same boat. But, I have an almost constant pain on my right side. I was also told that the pain is different for everyone. I had severe pain when I was first diagnosed with endo, but didn't have that severe of a case of it. I also have bladder leakage problems and will probably talk to the dr about that also.

Hi shaines!

Let me see how much information I can give you without causing overload!

First, for doing research! The more you know about your medical condition, the better able to are to make the best decision for you. We have several Endometriosis Resources you may want to read through as well.

Second, I want to make sure you are aware that a hyst is not a cure for endo. Having your ovaries removed is not a cure either. Thus, your hyst may provide you with relief depending on where your endo is location, how much is removed, etc., but you could still run into problems down the road. Knowing this in advance is benefitial to you as you are not hit out of no where like some women have been.

Third, some drs do not even stage their endo patients. The reason why is that symptoms do not dictate stage. For instance, I have stage IV endo. My symptoms in no way indicated that my endo was this advanced. I basically had no pain prior to my hyst, I just bleed for 2 years. I had "sensation" on the right side which was more likely the endo on my appendix than anything. (I was on birth control pills for the majority of my menustration years as my periods were so bad, so it is possible in my case they helped with the pain.) I have times of pain now, as endo was left on my bowel walls as the risk of removing it was too high.

Your symptoms do sound like what many of us experience with endo during our cycles. The lower backache is pretty typical of endo patients along with bowel issues. Cramping can vary, but some ladies find after their hyst that they also had adenomyosis, sometimes refered to as "endo in the uterus."

My hyst for endo was when I was 25. My GYN and I felt it was best for me to keep my ovaries for the benefit of my overall health. Have you discussed whether or not you will have a BSO along with your hyst? If you will be having a BSO, it is very important that you make sure you have a dr who is very knowledgeable about endo and HRT prior to your surgery. HRT for endo ladies can be very tricky. And since endo can be microscopic, it can be unintentionally left behind and then feed on any estrogen, whether from your ovaries, from what is stored in your body fat, from supplements such as black cohosh and soy that contain plant estrogen, or your HRT.

If at all possible, you might consider visiting with an endometriosis specialist if you do not have one already. Have you had a second opinion regarding having a hyst? Have you considered alternatives such as having another lap, trying one of the various medications to treat endo, or Lupron or Depo Provera? The hyst is permanent, but as it is not a cure, you might want to see if an alternative might be an option for you.

Also, talk to your dr specifically about the pain during ovulation as this could be related to cysts rather than endo.

Fourth, if you are having issues with a leaking bladder, I would suggest you talk to your dr as soon as possible. This way if you need to have repairs done at the time of your hyst, you can have the appropriate surgeon on hand, such as a uro/gyn, and the right amount of time can be scheduled for your surgery, rather than having to have more than one surgery. You also may need to be referred to a uro/gyn or urologist prior to your hyst to see exactly what is occuring.

I wish you the very best and hope you are finding answers to your questions!

Thank you for all of the information! It will be most helpful for me to talk to my doctor regarding the combination of problems! I think they are planning on leaving my right ovarie, but my left is in really bad shape so that one has to come out! The doctor that had performed the previous surgery had taken out a tumor behind my left ovarie but failed to ever send it to pathology for testing. This has my current doctor a bit concerned! In fact when she was reviewing all of my reports from the previous doctor she had called me to ask me if I was aware of it since I did not mention it to her in our appointments! Of course I was not!

Anyway she really does not know what she will find once she gets the scope in and starts exploring! As it stands she is removing everything but the right ovarie.

Thanks again everyone!