Complex Tumor, words of advice needed

hey jo, i'm 33 and also have an autoimmune disease, i'm on pred a few times a year and luckily manage quite well with few symptoms. I too have small children (3 and 1) and after a funny episode of an irregular period and sudden onset of lower back pain last year, I was referred to an ultrasound which found an enlarged ovary inclusive of a complex mixed echogenic mass just under 5 cm. I then also had a ca125 and the ultrasound technician scared the daylights out of me by insisting I should ring my GP then and there and marked my findings as urgent. My blood test was normal and although i didn't quite meet the criteria for a fast track referral, my GP did one anyway and I was seen 2 weeks later by a gyn oncologist specialist. To make a long story short, they didn't know for sure what it was but the gyn thought it may be some sort of inflammation and the solid components as seen on the ultrasound was in fact my ovary. I ended up having a laparoscopic  surgery in march and opted to have the entire ovary and tube removed. My biopsy results came back last month as endometriosis. 

I can absolutely relate, when I was first told about it, I thought the worst as I didn't have any history of endo or gyn problems and my mum died fairly young of breast cancer. So what I've learned by reading up and asking a lot of questions during my appointments is that the ca125 is a fairly routine blood test with cysts and pelvic masses and isn't a diagnostic tool for ovarian cancer. It can indicate that there is something going on but endometriosis for example or cysts in general, are very very likely to raise it. So even if your ca125 comes back raised, don't read too much into it. My Gp initially assumed I had a cyst until I saw the gyn consultant who said it's definitely not a cyst. They also look for free fluid in the pelvis and vascularity which can be signs of a malignancy. You have to bear in mind that it is always more likely to be something benign than not.

I can relate to your hip pain, I had horrible lower back pain on the side of my affected ovary. The pain was radiating down my leg and I really felt it in my pelvis. There were times in the morning when I had a lot of pelvic pain and sleeping in certain positions was very uncomfortable. I too was taking a lot of ibuprofen ect.

When this whole thing started, I started taking bromelain supplements and although that didn't kill the pain completely, it helped me quite a bit in generally feeling better and less "inflamed". 

I hope you'll have a positive outcome and you most likely will, there are so many benign conditions and they just can't tell for sure just by ultrasounds and blood tests. But i think they have a pretty good idea in general and most tests are just done to be on the safe side. 

 

Hi, i am 52 and waiting for my op on a 10.5 cm cyst, my mum had breast cancer and a hysterectomy due to cysts.

My blood test was ok and i have fibromyalgia and i am on pregablin and amitriptylene for pain but have had awful  pain in hips and legs and unable to sleep as i cant get comfy. I wonder if this is the cyst pressing on nerves? or the fibromyalgia.?  we will find out after the op i guess

Hi! I had 2 benign cysts and as I waited for surgery the pain built up. By night, it would be projecting over to my hip and it was a severe "ache"..... now that surgery is over I don't have it anymore. Hope this helps. 

I’m so glad I came across your post! I have a complex septated cyst when I went to the ER for pain.  i feel like hasn’t been given much urgency, the first opening to see my doctor is July 5, even though I was told it needs to be removed and biopsied ASAP by the ER. About a week ago I woke up with severe hip pain, I couldn’t sleep a full night since then due to the severity and discomfort that happens at night when sleeping. It also feels like my side of hip  is bruised or something because it’s so tender to touch.  I was thinking if the two could be connected but feel like I’m always just kind of written off..UGH. We should chat about it sometime because I feel so alone about it and what to do 

Just wanted to update.

My bloods are normal. CA125 was only 14.

The doctor did another ultrasound as the CT has not returned and he said that it is likely endometriosis, which can cause quite severe symptoms. He told me to just keep taking my autoimmune meds. Once the CT comes back and we know the scope of the situation, he has advised larprascopic surgery and told me it is likely I can keep my ovary, which is great news!

My mom has endometriosis, so i'm not at all surprised by that. Thanks mom!

that all sounds very positive! my ca125 back then was similar to yours, at 17 and after surgery was told I had minor to moderate endometriosis. my right ovary was somewhat attached to my pelvis. none of this was seen on ultrasound but since having the surgery, my pain has greatly improved. the constant deep ache in my pain was gone immediately and I only occasionally get residual back pain when i overdo something. 

i absolutely believe that everything is somehow connected to a certain degree and maybe having an autoimmune illness makes us more prone to certain things not working properly. my condition is largely mild and a rare form of vasculitis, i see a rheumatologist for checkups. I completely understand what you mean, diagnosing something like an autoimmune illness is not straight forward. I was unwell for a year before I finally had a diagnosis. So naturally when something's wrong and we don't know exactly what it is, it's very worrying. I got really panicked when my ultrasound findings talked about a mass and a structure and how it must be considered suspicious. It ended up being "just" endo. Of course it's good that they investigate further and take things seriously but you can get really worked up when you don't know what's going on. 

You should be able to go home on the same day with keyhole surgery and recovery is pretty swiftly too. I had very minor pain afterwards, mainly shoulder pain from the gas but was able to get around okay right away. The only other comparable I had was a c-section and the laparoscopy was a breeze compared. Keep us posted how you get on. You'll be absolutely fine!