Pelvic pain, Endometriosis Stage 4, Disability, and Hysterectomy
I am 44 yrs old, have never had children, been physically disabled (due primarily to pain and severe fatigue) with no quality of life for almost a year, have been suffering with progressively worsening pelvic pain which has become almost unbearable, was recently diagnosed with Stage 4 Endometriosis, and am seeing an Ob/Gyn today about his experience with treating women via surgical hysterectomy...I'd appreciate some feedback on how a hysterectomy has helped your life. I have no life, am tired of being in pain, and I'm very tired of existing...I've read plenty of info regarding the "consequences" of this surgery. My mother had it (without ovaries) in her late 30's with a resulting increase in quality of life. But I'm not like my mother. Hence, my appreciation for any feedback with regards to your experiences post-op. Thank you all.
Hi Cleemur, first off I would like to say I am sorry for all the pain and discomfort you are in. Every situation is different, but for me I think it has improved my quality of life. I had my surgery on March 14th, lap assisted vaginal hyster, d/t heavy beeding, fibroids, endo, severe low back/groin/pelvic pain and low ferriten levels. I was able to keep my ovaries! I know it is too soon to tell, but the recovery so far has not been bad at all, compared to the back/pelvic pain I had before the pain is minimal. Once I woke up from the surgery the pain in that area was mostly gone, it does come back slightly if I over due it but nothing ibuprofen can't take care of! Before the surgery I was dealing with the back pain thru the pain clinic and nothing was helping, I was starting to become depressed d/t the pain and had difficulty doing day to day activitties (playing with my kids. dishes, working, etc.) without being in extreme discomfort. I realize now that the pain is mostly gone how much pain I was actually in. I am 33.. like I said every situation is different, but for me so far....it was a good choice. I hope you find relief in which ever choice you make!!
I do not know the exact pain you are in as no one does but you. I do however know about the pain associated with stage 4 endo. In my experience and my opinion a hysterectomy is an absolute last resort. You can have major relief if not total relief temporarily with laparoscopy. I had 4 and they generally lasted for about 2 years. How did your doctor diagnose you?
http://endometriosis.org/endometriosis/diagnosis/ .... Endometriosis can only be diagnosed via laparoscopy with “visual inspection” unless disease is visable in the vagina or elsewhere . – but the surgeon performing this procedure needs to know what s/he is looking for  – in fact: the incidence of the diagnosis of endometriosis is down to the curiosity of the surgeon – and the pathologist!
There is no simple test that can be used to diagnose endometriosis, which may be why there is a diagnostic delay of up to 12 years in some healthcare settings.
At present the only reliable way to definitively diagnose endometriosis is by performing a laparoscopy and to take a biopsy of the tissue. This is what is known as “the gold standard”.
If you have not had a laparoscopy there is no way I would let any doctor do a hysterectomy.I am currently 34 years old and I had a full abdominal hysterectomy (cervix, uterus, what was left of my fallopian tubes, and ovaries) Sept 24, 2007 (the day after my 31st birthday). I was given an epidural before surgery and it was left in for 3 days. After surgery I could not lift my right foot off the ground. I was unable to walk and was in a wheelchair for 2 days and then only a few steps at a time pushing the wheelchair. The third day I was feeling a little better until they took the epidural out and then I started having hallucinations from the pain and was back to square one on could not walk. They had to call in a pain management specialist and it took him a day to get the pain bearable.I was in the hospital for a little over a week and was not released to go back to work for 3 months. It was the absolute worst experience that I have ever had to go through. I had a oncologist do my last laparoscopy and he had to remove a tumor at the same time so that is who did my hysterectomy as well. He is an awesome doctor ... my bad experience was not him or his work but the surgery and what it consisted of and the recovery. I know at least 4 people who have had hysterectomies due to endo and I do not know anyone that was in the hospital as long as I was. I did the hysterectomy as a last resort. I knew after my second laparscopy that I could not have kids due to the endo had eaten away at my fallopian tubes. When I went in to the doctor I when he told me I needed the hysterectomy I went in prepared to beg him to do one but when he told me I needed one --- I was crushed! I know that makes no sense what so ever. But it hit me --- I would never ever ever be given even the slightest possibility of ever being pregnant. The "reality" birthing shows they have on tv now a days .... I cry! I was denied that! I don't regret the hysterectomy but put it off as long as possible. The changes that your body will go through ... My body has no moisture! I have to put moisturizer on everyday or I flake. Sex ... no moisture there either. These are the things I went through .. That does not mean I am saying it is what you will go through. You will not know that until it is done. I have had back surgery (anterior L5S1 fusion) that did not even come close to this. The day of my back surgery I walked over 10 miles -- no that is not the norm but the doc said walking was the best thing for me so I did without much pain. I dreaded the back surgery because I though it would be similar to my hysterectomy but they were not even on the same planet! Think long and hard before you do something that you can not ever undo. Do lots and lots of research to figure out what is best for you. Try to find an endo specialist in your area. Get a second opinion. It might seem I am trying to scare you and that is not the case. I just want you to know all the possibilities and make the decision that is best for you.
If you decide to have a laparoscopy you are more fertile than any other time (other than right after child birth) and the best way to get rid of the endo is pregnancy after the laparoscopy. If you are not at a time and place in your life where you want to do that there is medication they can put you to keep it at bay for a while. After my first one they put me on a drug called Lupron Depot that put me in menopause. I stayed on that that drug for 6 months. It was 3 years before I needed surgery again.
I hope this helps you in some small way. I will be here to answer any questions about what I went through or what I have found on the internet.
You got some good advice from diffrent angles from both posters.
A hysterectomy as you know is major surgery and of course should be last resort. I had one in 05, I like you had endometroisis that turned into andenomyosis ( thickened heavy boogey saggy uterus) I also had cysts on ovaries my right ovary had attached itself to bowel with endo tissue, endo tissue can comprimise other organs.
I got a method called the DaVinci Robotic hysterectomy its with not doubt the best way to go, least invasive, less scars, quicker healing, less risk of blood loss. Please do a search and read up on it.
Your other choice would be as above poster mentioned a chemically induced menopause, Leupron injections are commonly used for this , however there is a high rate of reported negative side effect of rather severe depression/weepiness.
Personally Im sooooo glad I had my hyster, I was in severe pain, made many many trips to ER.
You could always try the Leupron and discontinue. Speak with your dr about this , I always suggest writting down all questions and drs answers.You are likely within 7-10 years of being in full natural menopause which will make the endo dissappear.\
This is a very personal choice you and your dr need to make, Its very difficult at any stage especially advanced (4) to get all endo tissue , the drs do the best they can, surgery runs risk of scar tissue developing and addhesions. However if this is your fisrt abdomonal surgery those risks decrease.
good luck pm me if you like if you have any questions.
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