Not sure where to go next

Hi everyone I will try my best not to make this post extremely long...which will be hard because i have so much to say.

I'm just not sure which way to go next. I've been having problems with my period since I was young. After I started having children they did get a little bit better but after two miscarriages and some fibroids and just getting older I found myself having anemia being tired all the time and in so much pain my doctor has recommended me having a hysterectomy as an only option.

I am scared because I am only 40 and I really don't want to go into menopause. The doctor informed me that she would not be taking my ovaries but if I were to have a hysterectomy I think I would want them out anyways.

My mother had breast cancer and then eventually passed away of lung cancer at the age of 53 they are not sure if it was a result of having the breast cancer in the first place. My sister died a couple of years ago at the age of 45 from a gynecological cancer they don't know exactly which kind. My brother in law would have had to have allowed an autopsy which he would not.

I am scared because my ovaries hurt all the time there is maybe one week out of the month where I am NOT having some type of pain. Sometimes it's just a dull ache right down my upper thighs and other times it so bad I can't do anything at all. I just lay on the couch. The strange part is when i actually do get my period I get relief. (Other than the heavy bleeding and large blood clots)

My left side seems to be the worst and ever since 2005 when I had my second child I have had swelling in my left leg that has never gone away. One doctor has mentioned that it could be due to gynecological problems which has me wondering if my sister had the same problem (she had major swelling in both of her legs). They've done all kinds of tests on my leg to determine swelling and have found nothing.

So far I have only had ultrasounds done. Transvaginal and a sonohystogram which have come back fine other than some fibroids (which according to the Dr are not that big and should cause no problems.

Something is going on with me though and I can't help but be worried about ovarian cancer. The ultrasounds haven't picked up anything but I still wonder.
I've asked for the CA125 tumor marker test and they won't let me have it. They say it's useless with my age due to my hormones.

I don't know where to go next. I have an appointment with a specialist Friday and I want to get a ct scan for my pelvic area.

I want a hysterectomy to be a last resort. I'm very lucky to have 3 beautiful children but I have a new partner and we want to have a child together.
I suffered a 2nd trimester miscarriage in February which was devastating. I know with my age I have the cards stacked against me.

I can live with the pain for now. I'm just so worried it could be something much more serious the drs aren't picking up.

I'm just not sure what to do next.

Thank you for listening and so sorry this post is long.

Hi Daphne - I'm glad you'll be seeing another specialist soon. Sometimes a fresh perspective makes all the difference. I think some other more precise imaging would be great. Ultrasounds show some things but nothing in comparison to CTs or MRIs.

It is true, the CA-125 is not a good test for the general population. At one time the hope was it would be a predictor for ovarian cancer but there are actually lots of things that can elevate the number. CA-125 is most useful in women who have been diagnosed with ovarian cancer, undergoing or undergone treatment. The number is much more meaningful then.

Your family history is definitely complex too, with unfortunately not an entirely clear picture. There could be risk factors in there for you but you don't really know enough. If a hysterectomy does end up in your future and there is still some debate over keeping your ovaries or not, you may want to consider genetic testing. This would definitely show if you are carrying any high risk genes and may help you decide what you would be most comfortable with.

I hope you have a good initial consult with this new specialist and have renewed hope that they can figure out what's going on with you. And most importantly - that the issues are benign and a gentle solution can be found.

Keep us posted!

I'm sorry for everything you have gone though. I don't have advice or personal knowledge relating to your concerns with cancer, but I do feel like you could benefit from reading up on Pelvic Congestion Syndrome (PCS). Basically, it's varicose veins in the pelvis that can cause pain and it typically affects those that have had multiple children. For those with PCS, pain is typically worse at the end of the day or after standing / sitting. It can also cause back, flank, and leg pain and swelling.

PCS was suspected for me based on transvaginal ultrasound results but the only way to definitely diagnose it is through doing a pelvic venogram to examine the veins. PCS was missed on my CT scan and my gynecologist did not see anything abnormal when he did an exploratory laparoscopy. I have never had kids and my PCS is thought to be the result of having two other vascular conditions: Nutcracker Syndrome (NCS) and May-Thurner Syndrome (MTS).

PCS is often a diagnosis of exclusion because it is generally missed on ultrasound/CT/MRI imaging but with an Interventional Radiologist, it is usually diagnosed and treated during a single out-patient venogram procedure. So, PCS may or may not be contributing to your symptoms but it may be worth a look since it's a pretty easy fix.

I'd be happy to answer any specific questions you have about PCS and having a venogram done. Best of luck to you.