Dear sisters, I am full of questions... I was diagnosed with stage 4 endo on feb 14,2013 after day of diagnosis i was given lupron 11.25mg injection and the endo pain never let up i was in drs office every week or two then he tells me i need a hysterectomy he sais the endo couldn't be removed so this was end of april I went for a second opinion and this dr sais he could remove it so I had laproscopic june 7, 2013 after surgery i took progesterone but I had to stop the migraines were unbearable and also my endo pain was coming back he put me on majes but i am in more pain than i can bear some days im worn out I swear I can feel it on my colon! I know there is no solution for endo but what will hysterectomy do for me if i keep an ovary? I am so scared especially about the endo on my colon i thought it was just removed in june (grrr)...
Did your doc remove the implants? If not, that could be the problem. There definitely could be endo on your bowels and colon-mine was. A hysterectomy might help with the pain but I think I would get a second opinion. Get an endo specialist. I still have endo pain years after my surgery and wish I had gotten more information. I am doing better but just know that a hyst does not cure endo. With your pain being so bad, you really need to get someone skilled in this to help you.
There are several things that could be going on, and I'll pepper in my own experiences:
- As Zenyatta said the endometriosis may not have been properly excised, meaning that the surgeon did not go deep enough to remove the entire implant, and this can actually cause quite a bit of pain as the deepest part of the implant can be close to nerves. Or the surgeon could have missed implants. The chance of this depends on the skill of your surgeon, was your surgeon an endometriosis specialist? What is their track record with endometriosis? There is a sticky at the top of this forum that goes into detail regarding what to look for in a specialist.
Knowing how thorough and successful your surgeon was in removing the endometriosis is going to be important in regards to follow up. As
- You could have Adenomyosis in addition to Endometriosis. I was fortunate to have all of my Endometriosis excised at my first surgery, I was a Stage 3 but with deep implants and dense adhesions I was in constant pain and with disabling bowel pain. After surgery I had brief relief which ended at my first period and restarting birth control. We upped the dose which stopped the irregular bleeding, however the pain became excruciating. I started on Lupron which caused a reduction in pain, but not complete, more on that next point! Upon stopping Lupron extreme pain immediately returned, and debilitating digestive issues returned.
Anyways I had two specialist review my surgery notes they both agreed I had a complete excision. It turned out I had Adenomyosis, abnormal growth of endometrial cells in the muscular walls of the uterus. It was hard to identify at my first surgery as there was so much other crap going on with my uterus (3cm fibroid, and my uterus was coated in endo). Due to my poor response to medications, other than Lupron which is not good long term, I opted for a hysterectomy.
Adenomyosis is a similar but separate condition from endometriosis. Adenomyosis can cause severe bowel issues through the increased release of prostagladins (pain and inflammation signals). It is a hard condition to identify, as it happens within the muscle layers of the uterus, not on the peritoneum like Endometriosis. However, a skilled endometriosis specialist can usually identify the condition through treatment history, imaging, symptoms, and visual inspection at the uterus at surgery. My uterus was small but mosty red and hot pink when I had my hyst! Definitely not healthy! Since my surgery, even though it has only been 2 weeks, I have been sooooo much better.
- However, Endometriosis, unlike Adenomyosis, really gains no benefit from hysterectomy. The reason why a hyst clears up Adeno, is because all the implants are removed, because they are in the uterus. Since Endometriosis is extrauterine the implants need to be tracked down and carefully excised, cut out.
Lupron and other medication options will have limited benefit if extensive amounts of Endo or Adeno are still in the body. Endometriosis especially is known to be able to form it's own estrogen, so deep implants can keep running even if the ovaries are gone, or shut down through drugs like Lupron. Excision with a specialist is really the only answer especially with moderate to severe endometriosis (stages III and IV).
- Back to why I got less than total relief on Lupron. It turned out I had severe pelvic floor dysfunction. Loss of synergy in the pelvic floor muscles, tension, tightness, scarring, and spasms. I went to pelvic floor physical therapy, many gyns do not think about it and you need to ask for a referral. Unfortunately everything with endo requires the most specialized professionals and it is important to work with a pelvic floor physical therapist that specializes in pelvic pain. The therapist, who is most of the time female, does work internally on trigger points, on the abdomen, lower back, thighs, etc. It may sound a little scary, but it's totally worth it. Within a month and a half I was back to "normal" which is something I hadn't been in over 3 years. The trick is using the modifications, and exercises at home. I was taught how to correct my posture during bowel movements, how to improve my sitting when I drive with a pillow.
My therapist also really helped me better understand where my pain was coming from, what I could do to correct the pain, and regular excises to do at home to keep making progress. On top of lots of pain relief, improvement with mobility, release of adhesions, and tons of other benefits therapy made me much more informed. It also provided a lot of good information for myself and my treating physicians.
It also made it very very clear than when my pain returned post Lupron that something was very very wrong with my body, and with an extremely pelvic disorder specialist we were able to narrow down what was going on, and what the best treatment options were.
- Endometriosis is unfortunately one of those conditions that require us to be our own extremely well informed advocates. Many gynecologists are simply not informed, or are behind the times. It is a minority of doctors that adequately treat this condition, and unfortunately their not listed as such in the phone book, not even with your insurance carrier. Websites like this one and online support groups are a great sources of information on finding a good doctor, and some even have some vetted specialists listed. I found my doctor through a dedicated Endometriosis forum and was able to read up on over 3 patients who had surgery with him and ongoing treatment for Endometriosis.
Ask questions, and read, read, read. Be assertive with your doctor and when in doubt find another one.
An anecdotal note on specialists is that I have found the good ones are not hard to see. Both my first surgeon and second surgeon I got an initial appointment within a few weeks, and a surgery date within a month. Also they have always had a nurse to talk to and I good give my story about how much agony I was in and they'd fit me right in. Versus my family gyn where it take months to get an appointment. Many specialists get that they are dealing with women who have crippling illnesses, and keep time open.
Well, I had replied to you earlier today, but apparently it got lost in cyberspace some where!
Originally Posted by whatnow75
I am full of questions...
That is what we are here for! However, try not to get overwhelmed with information overload. Endometriosis is a complex and confusing condition that confuses even medical professionals! Also, since it involves a lot of theories, some information is subject to personal opinion, beliefs, and experiences.
Rather than contribute to too much information overload for you, I am only going to reply to your specific question and fear at this point. If you have other questions, feel free to post them, even if you need to post a whole list of them! You can also learn a lot by reading through our Endometriosis information page where you will also find a link to our Endometriosis articles.
I know there is no solution for endo but what will hysterectomy do for me if i keep an ovary?
First, there are solutions--lots of them! Some are more effective than others, and there are a lot of variables that come into play. While birth control may work just find to keep endometriosis at bay for Woman A, it might not work at all for Woman B. Lupron has been helpful for some, not for others. We have had ladies post who saw top endometriosis specialists for surgery, yet they continued to have issues. What we have to do is be as informed as we can, and then seek a solution that fits within our means. Generally speaking, the most successful treatment is excision of the endometriosis implants, preferably by an endometriosis specialist. Some physicians also combine surgery with medical treatments as yours did.
A hysterectomy simply removes the uterus. If you believe in the retrograde theory, then you could assume a hysterectomy would prevent new endometriosis. Otherwise, unless you have implants on the uterus (as I did), removing it doesn't really affect current endometriosis. It could, however, address bleeding and uterine pain issues.
As far as the ovary, no ovaries does not mean no estrogen and no endometriosis. It does, however, open the door to a long list of new health concerns. Those of us with endometriosis have to carefully weigh our pros and cons along with our specific circumstances (including the skills of our medical team) to determine what is best for us when it comes to ovaries and hormones. In my case, I was 25 when I had my hysterectomy. Even with a stage IV endometriosis diagnosis, my OB/GYN would not even discuss the possibility of removing my ovaries. He felt the risks were much too high for estrogen related issues. I agreed with him, as did my GP, even though we knew he was intentionally leaving endometriosis on my bowel walls.
I am so scared especially about the endo on my colon i thought it was just removed in june (grrr)...
If you had endometriosis on your colon and it was removed recently, you could be feeling healing pains. I hurt for weeks following my excision surgery which involved removing endometriosis from my bowel walls. Don't panic and assume you have extensive endometriosis again, it might not be so. For one, it only takes flecks of endo to cause intense pain. Also, keep in mind that bowel issues can be the result of endometriosis in areas adjacent to the bowel. Additionally, hormones can affect the bowel.
Are you seeing an endometriosis specialist? If you had endometriosis removed from your colon, then it sounds like you have someone with some skills beyond those of a general OB/GYN. Typically, an OB/GYN will not have the skills to remove endometriosis from the bowel walls. However, it at all possible you want the best of the best when you head into OR! A specialist could up your chances for a successful surgical outcome.
If you are scared, sit down and talk to your doctor before going into OR. I wish you well and hope you and your medical team are able to have you feeling better soon! in there!
You've already gotten some excellent advice here. I just want to reiterate that you need to find an endometriosis specialist. I wish I had almost twenty years ago. Instead, I had five different surgeries with five different doctors, each one thinking that they had "gotten it all." The Internet has made researching doctors so much easier!! The reason for my hysterectomy was adenomyosis, but I wanted an endometriosis specialist to perform the surgery to do a thorough look and excise anything found, which he did.
I'm sorry for your struggles. Know that you're not alone.