MRI-really worried!

Hopefully my story well help.

I'm 39 and have been trying to get pregnant.

I had my right ovary removed in 2004 because it was engulfed in scar tissue. This was because ten years earlier, I had a cyst with a fertilized egg in it, in the wall of my ovary and it blew up like a grenade. I had two kids after that, though. After my second baby in 2000, I had my tubes tied.

In 2013 I had major surgery to repair my one remaining fallopian tube so I can get pregnant again. It's been about a year and a half and my belly is still numb in a large area surrounding the incision. This is because they cut through a nerve. I highly doubt it'll ever stop being numb.

In December of 2014, on ovulation day, I started having excruciatingly sharp pain in the area of my only ovary. The pain shot into the tip of my hip bone and radiated along the top of my pelvic bone, down the back and ended at my tail bone area. It also shot down my thigh on the same side. I went to the ER many times and all they saw were two small ovarian cysts.

About two months later, a horrible burning pain started and this was in addition to the already severely sharp pain I was experiencing. This burning pain caused the hip bone pain to radiate down the front if my pelvic bone and ended in my pubic bone.

After being pawned off from Dr to Dr, I finally found the most wonderful OBGYN surgeon. She was worried and did another ultrasound. One of my cysts had all of a sudden gone from being one inch to the size of a lemon. In the ultrasound, it looked like it was a hemorrhagic cysts. But, with the severity of my pain, my surgeon was worried my ovary was possibly twisted and dying. So, she got me into surgery the very next day. This was now three months after the pain started.

She went in laparoscopically and found a little bit of a lot of things. The cyst was fibrous, caused by endometriosis. My fallopian tube was suck with adhesions to my bowel. There was a bit of endometriosis on the right and left side of my uterus, but luckily not inside it. My bowel had some scarring and a little endometriosis. Along with all that, my one remaining tube that was repaired in 2013, had been blocked by scar tissue.

My amazing surgeon removed the cyst, scar tissue/adhesions, endometriosis, and unblocked my tube. She cured my pain, she's my hero!

One reason why I wanted to post all of this is to let you know that it's possible to actually get rid of the pain and save your reproductive organs so you can still get pregnant. If course, there are different circumstances for some, but not for all.

My surgeon was specially trained to remove ovarian cysts THE CORRECT WAY, with little to no damage to the ovary. Apparently, in medical school they're taught to just rip the cyst from the ovary wall, which will cause damage. My surgeon was trained to gently tease it away from the ovarian wall and stay away from the egg reserve as much as possible. It takes a long time to do such delicate work, but if you still want kids it's definitely worth it!

One other thing I want to mention is, each month when an egg is developing in the ovary, it develops inside a cyst. But, at that point it's called a follicle. Once you've ovulated, the follicle is then called a cyst. They typically go away on their own. I've had them linger a little, sometimes for months, since I started puberty.

Anyway, my first period since my surgery started a couple days ago. For the first time, I'm feeling cramps the way normal women do. I am having ovary pain, but that's normal this soon after surgery. Also, my period is heavier than I've ever had, insanely heavy. But, that's normal after this surgery as well.

I hope this info helps any of you put your mind at ease and educates you a little about what you may be going through. There's hope! I personally recommend the laparoscopic surgery, but only if you find a surgeon who specializes in this sort of thing, one who's had additional training in making sure they're as careful and gentle as humanly possible

Hi Sarah

In a funny way I'm pleased to have found you here.

I'm also 35 and have just been diagnosed with a large ovarian cyst.

Went to see the gynae last week, thought it would be a simple case of booking me in for surgery but like you I have also been referred for more blood tests and urgent mri.

I have 4 kids so am not having the same worry as you with regards to that.

Since diagnosis 2 weeks ago I am just going through the motions, not eating much, have lost a bit of weight which makes me worry more and am on sleeping tablets now as I was getting about an hour or two a night and I love my sleep!

Absolutely dreading the mri, I am anxious enough about things as it is, on the other hand just need to find out what this is now.

Would be nice to keep in touch, let me know how you are getting on, think we are very much in the same boat at the mo

Clare

Dear Clare and Sarah, It is such a scary time - I think the hardest part of this is from finding out your cyst is not so simple to finding out what it actually is. THe past 6 weeks has been the longest of my life. Sarah I am about to have surgery tomorrow and I am sure that the rumour mill has gone into overdrive that I am pregnant! It is so uncomfortable. As far as the CA-125 goes, mine is sloghtly raised but they really only worry when it is in the hundreds and thousands. An ovarian cyst just on its own can raise so can the time you have the test in your cycle. The MRI isn't much fun but it really a great test to have done - you know that you are getting the best treatment! And when they do come to remove the cyst, make it clear that you want to preserve your fertility ... these days they do everything to do that ... unless you are older like I am and then they just take the lot!

Anyway, I am just coming to the end of the waiting, after 6 weeks tomorrow I am having a hysterectomy with overarys. I have had ultrasounds, an MRI and CT scan and about 5 lots of bloods taken ... i feel so uncomfortable now I am just looking forward to having it out and moving on! My surgeon has sadi that the worst case scenario is a borderline tumour and I am 48, so much older than you! (I am not sure how he can be so sure though!). I am just taking deep breaths and wanting to get tomorrow over with! Try not to worry - it doesnt help and until you know anything it will rob you of living while you wait. Try not to google too much!

 

MRI is this afternoon, had the phone call yesterday, I am absolutely dreading it. Everything so far has seemed so rushed and I cant help thinking the worst.

Think tomorrow will be worst when I am waiting for the phone to ring with news.

Desperately, desperately trying to stay positive but I'm finding everything so difficult at the moment.

Clare x