Venting out: Upcoming Laparoscopic Surgery for Ovarian Cyst &or Endometriosis

[roxy_grrl]

Hi everyone,

I just recently joined this site since I've been wanting to vent out! Today, I got a call from my GYNE and he told me that my Ca 125 results is really bad it came out to 104 instead of the normal less than 21. He mentioned that I might have endometriosis or ovarian cancer but it is less likely since Im only 29years old and am trying to get pregnant.

Before that I was diagnosed by my OB a few weeks ago with ovarian cyst on the left side a 3.somethinf and on the right 4.2 [i know how unlucky right to have 2]. I opted for the BC treatment she put me on Junel 1/20 so i have only been taking it for 2 weeks. She notified me about the posibility of laparoscopic surgery but that would be my last resort and I was supposed to go back and get an ultrasound done on october. But everything changed when I went to visit my GYNE this monday. I told him my lower right side abdomen is bothering me and that is were my 4.2 cyst is so I thought oh noooo! There might be a possibility of surgery and so he did told me that the october plan might be sooner but I didnt know that its Aug 13 sooner.  I just got back from a 2weeks vacay at work and now 4weeks recovery? I already sent an email to my boss and shes cool with it thank GOD!

Today and these past few weeks were one of the worst times of my life! I have never been diagnosed with anything and when I found out I have two ovarian cyst it broke my heart because I am trying to get pregnant since Ive been married for almost 3years and Ive been taking prenatal vitamins to ready my body then my OB puts me on BIrthcontrol as a treatment for my cyst then now I might have endometriosis or whats worst is ovarian cancer. I was really tripping about having endometriosis because I read so much info about it and Ive been wanting to get pregnant and am afraid that I might never have kids ever and that thought kills me. Now Im having more negative thoughts and worries since theres an ovarian cancer thing issue. The GYNE said he wont know till he sends out my tissue for pathology.

I just have to vent out! I tried telling my friends but they havent gotten back to me yet and keeping all these to myself is killing me. Its already bad enough I am worrying my husband I feel bad as it is. My parents are here with us for vacay and will be going back to the Philippines soon and Im tryin to keep it cool and act cool so not to worry them. But I am super worried I kept telling my husband everything will be okay but man its killing me inside. Im so darn scared all I am doing is praying.

The next problem I have is for the 2-4weeks recovery period I will be by myself at home since my husband is new at his job and needs to pay the bills. I wonder if i will be okay being by myself? I dont want my husband and people around me to worry than it is. Sorry this is waaaay long i just had to let this out haha.

PS now I have blood in my stool and am being referred to a GI specialist.

[ticked]

If you are interested you can read my blog, its in my profile here a long with a bunch of Journals I have added

[BellyTorture]

Hi all I'm very new to all of this. I have been TTC for just over a year with no luck. I have some painful periods and all of a sudden irregular bleeding and cysts. All very scary for me. Do to some imaging tests and an elevated CA125 docs are thinking endo and I feel confident that's what's been going on. I have had so many GI issues that I can't even begin to tell you but none of the tests gave any answers as to what could be going on. Docs are now rec a lap surgery and I am of course terrified! I've never had surgery. Can anyone tell me their experience? Honestly yes I am afraid of being put under and the pain but I am even more afraid of throwing up after the surgery as I hear that's common. I have a vomit phobia! Please please tell me your experiences with this surgery. I feel like docs always play everything down. So scared. Thanks all!

[ticked]

No problem at all. I am here because to help because I was alone in my journey and I would never ever want anyone to feel the same way I did. :)

[roxy_grrl]

Oh wow I will try to look into ur blog and journal stuff thats pretty cool. You talking about what you have is very helpful in deed not just to me to other girls that are as confused as I am. Seriously I would have never imagine that there are things like this if it didnt happen to me! I have been living a pretty good life in a way except for the killer pains here and there whenever i get my darn period. Good to know that theres always a chance to conceive even if u have stage 4 endo ad have all these other stuff going on. So thank you for sharing everything you know and for helping us!

[ticked]

I have a blog of my experiences as well as journals on here. To be honest I have been to hell and back and still standing to tell the tale of my journey. I am in the process of writing a book as well so that I can help others along the way and also to let them know that they are not alone. My battle started at 13 and I am 37 now. I have complex- PTSD due to medical neglect as well as other things. If you are every interested in hearing more take a look on my blog or journals. :) We are a band of sisters that need to stick together in order not to go insane by how we are treated.

That being said PCOS and Endo are two different things. Here are the differences

PCOS-http://en.wikipedia.org/wiki/Polycystic_ovary_syndrome

Endo-http://en.wikipedia.org/wiki/Endometriosis

I know many women who have both. There are also many co-morbid disease that come hand in hand with Endo such as IC (Interstitial cystitis)

http://en.wikipedia.org/wiki/Interstitial_cystitis

Adenomyosis- http://en.wikipedia.org/wiki/Adenomyosis

When it comes to fertility everyone is different. there will be no way to tell until you start trying. I think the stats are 30-40% of women with Endometriosis are infertile. That doesn't mean a surgery can't be done to remove the endo and try again as that happens all the time. I was Stage IV and I conceived. It took about 1.5yrs. However there are some girls who have Stage I and cannot and go the IVF route. So try not to think about this route unless you have been trying for at least a year because that is the standard time from what I have been told by people.

The pain you are feeling in the bowels/rectum etc all could be related to intestinal Endometriosis, rectrovaginal nodule or one of you organs push up against or stuck to the bowel. It could be so many different things but a colonoscopy is the best route to go first and that is usually what they do before a surgery.

The way I see it for me... It took 14 yrs to diagnose me and because there were no cysts seen and I started to get a multiple of symptoms no one could figure it out. The Endo triggered Fibromyalgia for me and so some of the symptoms overlapped each other. When a cyst finally formed when I was 26, 4 yrs after the birth of my daughter they finally did something. So I always think that if that cyst didn't grow I would still not be diagnosed.

I have irreversible damage to my bladder and bowels because the Endo was so deep. It got to the nerves and now I have Neuropathic pain syndrome so it has effected me a lot. I would say at least get it taken care of because some people even with later stages of the disease have no symptoms or don't correlate them with their period and end up in the same position I am in.

Best thing to do is be your own advocate for this disease. Keep all your records, document everything like medications you take, tests you have done because sometimes they toss you around from one doctor to another and repeat things you have already done. Your surgeon is using the term excise so that is a good start. :)

[roxy_grrl]

Thank you so much for your wonderful words you are so damn right about everything! I am thankful that at least I am able to fig out whats wrong with me finally. I do hope you figure out whats wrong with you too and everything goes well with your surgery.

My surgeon will be doing an excision thank you for telling me that too I never really thought about all these things not until I read ticked talking about it in someones post.

I am getting a colonoscopy on Monday and will see a GI doctor. My Gyne wants to make sure everything is okay and move on with our Lap sched no problem. He also said it could be from my hemoroid too but just to be sure I am getting it checked asap.

Thank you again for the words of encouragement its nice to hear from people who understands me.

[roxy_grrl]

WOOOOW ticked you've been through a lot and its insane just reading it. I was wondering how you are feeling all those years you have it. I give mad props to you thats really hard and too crazy for me to deal with. I do hope and pray that its the last surgery that you will have and I thats good to have an awesome surgeon thats true.

Okay so for mine right now, I just made an appointment for the GI specialist reffered to me by my OB so he is suggesting to do colonoscopy so Im getting one done on Monday. Im scarred I thought I never had to do it until Im old or something. My Gyne said he wants to know that GI docs opinion if its cool to continue on the surgery on Aug 13 or if I have to wait and do some stuff with my GI doctor first. Somehow it got all complicated *sigh* I cant wait till I have answers.

My doctor will do an excision on me and he did mention that it depends on how long its gonna take and the worst would be doing that C-section cut that you mentioned. But his plan was the 3 small cuts so hopefully its just that too. He will be with my OB maybe because my OB referred him to me? Im not sure but good to know. As for my doctor being a specialist with Endo Im not quite sure but my OB I think would know more too.

I have heard about PCOS one of my friends have it and I was wondering if its the same as Endo? But I will let him and my OB know my concern about it too since I might have it.

Is it hard to have kids if we have endo? Im not sure but I feel that if I do have endo it seems like its in a later stage too (im hoping im wrong) I've been experiencing weird feelings when it comes to my bowel movement my husband kept saying im just dehydrated and not drink a lot of water. But everything I have my period it hurts like hell if i have to go to the bathroom. On a regular time when I have my period, I will get mad *** cramps, anus throbbing or my hemorroid (I developd it since i push too hard sometimes and get constipation idk why either) then my lower back aches like on my right butt cheek I thought its just sciatica since I dont exercise too. Sometimes the pain will go to my right thigh and its annoying its a killer whenever I have my period its like Im getting combo hits and I never plan to go anywhere during those times. I went to 2 OB and they said its normal man if I have tried to figure out what I have sooner it would have been better for me.

Thank you for telling me ur experience I really appreciate it. You've been through a lot and Im thinking that what Im going through now is not even half of what you went through. I will try to be positive and strong too.

[ticked]

To ease some of your fear I want to let you know that the CA-125 is not an accurate testing for Endometriosis. It can detect a multitude of inflammatory disease such as Endo, OVCA, Adenomyosis, inflammation, scar tissue etc.

The average marker for the CA-125 is 35 and below. That being said yours is elevated most likely because of the Endo like mine was. I had it done 4 times highest being 78.

You are not too young for OVCA at all so please take that into consideration as I have met many women who have been diagnosed in their early 20's as well as an 11 yr old (Which trust me was crazy to hear) OVCA is a silent disease and a lot of the symptoms are associated with endo and Endo etc. That being said only 99.9% of cysts are benign so I hope that helps.

Here is what you need to do.

How well does your surgeon know Endometriosis, because that will tell how long recovery will be or if he has the skill? There are a limited amount of Endometrioisis surgeons around the world for millions of women so having the professional that has that skill is what is most important.

Is he excising the Endo or just using laser? It makes a huge difference on recovery as well as scar tissue. If the Endo is not excised (cut out) then the root of the disease is left to grow. You need it cut out.

recovery all depends on the surgeon, the skill and what is done.

For example. I had surgery in 2007 the surgery was 5 hours long not 2 as expected. I had deep infiltrating Endo, rectovaginal endo, Deep sigmoid colon Endo, bladder Endo and massive scar tissue. I had a 5cm ovarian cyst removed and also had a PSN done (Presacral Neurectomy) all of this was done by a specialist who deals only with Endo patients and was excised out with some laser. The first week is always hard. I recovered fully after 2 weeks, minimal scaring I just couldnt lift heavy things for about a month.

2013 I had surgery with a surgeon that was trained by my first surgeon in 2007. She was trained to excise the Endo but in the end it was too complicated for her and she said my Endo was minimal and if I was to have a hyster (in which I wanted and no it doesn't cure Endo) that it would have to be an open surgery. I wasn't in that much pain waking up and was pretty much recovered in 3 days. Laparoscopy was used.

Now bringing you to my recent and hopefully final surgery that was done May 2014. I had my original surgeon operate. It was 2 hours, laparoscopic was done not open as he is a skilled surgeon. I had a modified radical hysterectomy, my pelvic lining removed, stents put in, Rectovaginal Endo removed as well as a section of my vagina as it was infiltrated with Endo. I had deep infiltrating Endo in the bladder and the sigmoid colon, I had a cystoscopy done to rule out IC. I had complications peeing afterwards and was on a catheter for 11 days after but I have bladder issue due to the Endo not being treated for over 14 yrs same with my bowels. So that being said I was bedridden for 11 days but I did walk around but didn't lift anything at all. I was walking around and feeling better after 2 weeks.

So that being said your recovery time should be around 2 weeks unless an open incision is made (similar to C-section) in which then it would take a lot of time to heal at least over a month.

So you need to find out his skill, if he excises, will he remove any organs such as an ovary or will he try to preserve it? I would also ask to be tested for PCOS which is polycystic ovarian disease. This can cause multiple cysts. It is possible to have both as well.

I would not worry about the OVCA because the chances are slim.

I hope that helps

[lulu747]

Hey I know it's scary but don't panic.  You are LUCKY you are getting your lap sooner rather than later, because then you will have answers, relief, and hopefully be able to heal.  Does your surgeon to excision surgery?  This is very important because it is the only surgery that actually removes the endo and does not create a bunch of scar tissue.  It is your best chance and being endo free and at conception.

I was told I'd have surgery in August but just heard not until Oct.3 and I am devastated.  I am 36 and this is my third surgery.  I have stage 4 endo- I also just responded on your other thread.  It's really important not to panic....You will have answers soon.
xoxox
Lu