So how many had normal testing first?

Hello all, I am Shae, from Jax Fla - My situation is a little odd/different (I think) and I'm curious to know if anyone else went through this like I did??

Hysterectomy is scheduled for May 24, 2016. I don't know all the acronyms yet - but they're taking the uterus, cervix and possibly the tubes. It will be a da Vinci assisted procedure.

Why do I think it's odd or different you ask? All of my tests continue to come back normal, and have for years.
-Normal paps,
-Normal physical exams
-Normal sonograms/scans (both belly and intrauterine)

However, I've been battling several issues for the last 3 years with seemingly no real answers as to any cause for them:

-Random bleeding even with birth control (I've been on several forms and strengths of birth control over the years with no help either).
-Bleeding during sex even when not on my cycle.
-Pain during sex that has increased dramatically over the last 2 years - to the point that I can only enjoy it maybe 3-4 days a month; the rest of the time he can't touch me without inflicting pain (regardless of pace, position etc)
-Cramping nearly 24/7, and sometimes it's unbearable (OTC meds, natural remedies and birth control doesn't help)

Also want to throw in that having had 3 miscarriages in my early 20's yielded no definitive results/reasons why either after me having testing/workups done after each of those.

So, after the last few years of testing, many many consultations with OB's and my primary Dr, trying so many alternatives - my 2 OB's have recommended a hysterectomy.

My last exam/consultation was probably the hardest one yet. My female OB told me that based on all of my symptoms and issues, that I have all the precursors and several indicators/risk factors for uterine cancer. Cancer?? Wait, what?! No one in my family has ever had any type of female cancer (Uterine, Cervix, Ovarian, Breast etc). So, all my other issues aside, this kind of was a wake up call, one I wasn't expecting, that helped propel me into the decision to have the hysterectomy (A 50/50 chance of developing the cancer in the next 5 years was enough to solidify my choice). They are 99% certain that I don't have the cancer, but are doing full pathology on everything they remove just to be certain.

So ... I'm nervous and scared and not certain what to expect, but thankfully my mom/dad BOTH will be there the day of surgery and have given me their unending support in moving forward with this decision. It's been a blessing to find this site and to see that there are many many of you who've gone through this whole thing and come out like shining stars on the other side!

Much love
Shae

Did anyone ever mention endometriosis to you? Those are all symptoms of that.

I had all those symptoms with fibroids. You may just want to get a second opinion it is a big decision. I am so glad you have your parents love and support!

I'm sorry you have been dealing with so many issues. It's not clear from your post why you would be thought to have a high likelihood of cancer in the next five years? Was that based on pathology from a biopsy or D and C? Have you consulted a GYN oncologist? If there is a cancer concern, they are the experts, and you might want an opinion, plus having one available to do or assist the surgery. Also I want to invite you over to the Cancer Concerns forum as well, for women with cancer or suspected cancer. We are here for support.

All my tests were normal including a C125 (cancer screening test). I ended up with a 16 cm fibroid. When the fibroid was removed, they found one stage 1 endometrial cancer cell within the lining of my uterus. Following surgery, no treatments were necessary and follow up paps have come back normal. Best to be safe than sorry. Hope all goes well for you. We're here if you need us!

I had the random, frequent and some points very heavy bleeding. Initial exams didn't really have a good reason. I has some small fibroids. Bleeding got worse with D&C, better for a time with a cryo-ablation then went back to super frequent almost continuous. The early exams and biopsies were okay. The last biopsy had hyperplasia, which in a few cases can be pre-cancerous. At that point I realized there was a family history of uterine and possibly ovarian cancer and opted to get everything out.

I've had bleeding heavy pain during sex tried different meds plus D&C. Nothing helped i found out i have Adenmyosis and just had my hysterectomy.

It sounds like adenomyosis to me, I also had all the tests that came back normal and it wasn't until my husband insisted on getting an MRI that they found what was the cause. Perhaps you can request one and definitely get a second opinion.

Hi all, thank you for the replies. I have been away from the pc for the last day and didn't get a chance to respond until now.

So I should have clarified - I had the CA125 cancer screening as well, and even though it didn't show actual cancer - she said that's where the markers/indicators are coming from. To boot, I have a spot on my uterus that is showing a touch of hardening. They can't visibly see any fibroids in there, but of course there may be something 'hiding' that isn't showing up right now, which happened to a g/f of mine who went thru these same symptoms and surgery in Oct 2015 (she ended up with adenomyosis diagnosis).

Also, I did have a very, very small case of endometriosis in my early 20's that with 6 D&C's total (3 after the miscarriages, and 3 since then for testing over the years) it was removed; she thinks it may in fact be adenomyosis instead; but with MRI's not really covered by insurance (My out of pocket is $600) and having so many other tests/procedures already, plus 2 different OB/Gyn opinions and my primary chiming in - that is how I derived at the choice to move forward with the surgery.

You all are a blessing and I thank you for the time you took to read my post and respond!

Shae

Somethings to consider. Active endometriosis can cause an elevated CA-125. If you had endometriosis before, you can have it now. And endo can cause all the symptoms you are describing.

Based on what you are sharing, I would not go into OR with your OB/GYN. If there's a risk it's cancer, I would want a gynecologic oncologist. If not and cancer is found, it's more complicated and can require more surgery. If there's a chance it's endo, I would want and endo specialist. If that is not possible, then a gynecologic oncologist would be a second choice.

For both cancer and endo, it any is left behind it can cause problems, so you want the best of the best for surgery if either is suspected.