1 Yr later and its back!!

So Its been a while since I have visited this page and reached out to anyone in my shoes. Please help, I am having a tough time dealing. On the 28th of this month I would have had a complete Hysterectomy and bi-lateral salpingo oopherectomy. I had a horrendous case of endometriosis. Sadly, looks as though they may have missed some in my 4 hour surgery or the microscopic endo has grown. But I am headed to the GYN in 2 weeks to set up another surgery date to get some answers. Im finally doing so good, and I have had bleeding vaginally and horrible pains again. I dont think I am strong enough to do this all over again. I am finally on a good path in life, heck almost done with schooling to be a Pharmacy Technician. Im scared, and I dont know what to do...

Strika

Hello Strika,

I'm sorry that you are facing this again...First of all here is
Tell yourself that you are strong and you are capable of getting through this!!!! I say this, because I know you are!
You have done it once before and you will do it now because you know you have to...and you will. You have a lot of living to get back to in order to pursue your dream of being a Pharmacy Technician. So if this surgery is something that is going to help, let it happen and allow yourself the time to heal and move on.

Please listen to your and do what you need to do to get yourself healthy!! You deserve it!

The hysterectomy was the most difficult surgery that I have ever had. However, if you are having the endo removed it should not be as difficult as the other surgery. I had three surgeries within one year of each other. It was very difficult and I had to slow down and take care of my health. I had scar tissue removed in October 2008, I had my right ovary removed in May of 2009 and I had my LAVH in June of 2009. Just try to plan ahead and and have a support system available for all of your needs. Also, research all of your options and maybe even get a second opinion if you are unsure of having another surgery so soon!

I am so sorry you are dealing with pain and issues again. Sadly, a hysterectomy, with or without an oophorectomy, is not a cure for endometriosis. So yes, your surgeon may have missed some implants during your surgery.

Are you definitely scheduling surgery or just discussing it? Does your GYN think the issue is endometriosis or something else? If you are needing surgery and you do feel it is endometriosis, you want to be sure you have a surgeon who has the skills to locate, recognize, and excise the implants. I definitely concur that you should consider a second opinion before heading into OR and finding an endometriosis specialist would be ideal.

I would suggest you keep a detailed symptom diary that you can share with your doctor. This can help both of you figure out what is going on, especially since endometriosis and adhesions don't tend to show up on diagnostic tests. It can also help the surgeon to know specifically which areas to check during surgery.

Has your doctor stated what might be causing the bleeding? If it is vaginal bleeding, endometriosis can exist in the vagina and in the vaginal cuff. Bleeding can also occur with bladder issues and many of us with endometriosis also have a co-existing diagnosis of Interstitial Cystitis. There are other reasons for bleeding including infection and vaginal dryness.

I don't mean to be the bearer of bad news, but if your surgeon does find endometriosis and if s/he is able to meticulously excise it, your recovery could be worse than your hysterectomy. Thankfully, my specialist's office had warned me about this so I was prepared for the painful recovery that followed my excision surgery. In fact, it was the most painful of all of my surgeries. Others have found this to be true as well.

I wish you well and hope you know that we are here for you! Please feel free to post any questions or concerns you may have and we will try to answer based on our experiences and research.

Hello there!
I first want to say that you are strong enough already because endo is such an awful condition! I was diagnosed with endo in 2006 and although I knew that a hyst wasn't a cure, I did have have it but kept both my ovaries. The surgery was not a success and I have been in pain ever since then. So, I can understand your'e frustruation with the symptoms returning!

Dont give up!! If you are so close to achieving your goal of becoming a pharmacy tech, dont give up! Although, I havent been on here in a while because I also felt defeated but I am here for you and any other sister that needs support! Please let us know how you are doing! Lots of hugs are going your way!

I am so sorry that you are having problems! I don't have any experience with your particular issues. I do have experience in getting 2nd opinions & beyond, until I or my child gets what we need with the least negative consequences. I would think hard about getting another dr.'s viewpoint. I will pray for you. Please keep us updated. Best Wishes!

Hi there, I had my TAH Both ovaries and cerix in 2003. About 4 years later I started having pain again. Oh yes and I had gallbadder out to...lol another surprisr treat.
Long story short, it has been 9 yrs and its back so bad that I'm currently 12mg long acting Morphine every 12hrs and more for short acting for break through pain.
I have been in and out, admitted for days, for severe abdominal pain. Had every test twice. They keep telling me there is nothing wrong....although my blood pressure drops and my heart rate increases when the pain is so bad. You can't make that up.
Finally I am going to see an endo specialist in Vancouver. My doctor has finally come to the conclusion that yes- its back and its bad.