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Endometriosis

Hi!  I'm sorry for what may be a long post, but want to give you a little background:

Last Spring, I was diagnosed with an 11 cm complex cyst with symptoms of bloating, pelvic pain, constipation, bowel and bladder pain.  The cyst was removed in May and turned out to be 14X11 cm.  I had a laparotomy due to the large size of the cyst and had a fairly large bikini incision (around 6 inches long).

My recovery was ok, but I was in pain a lot longer than I expected to be. In October, I was diagnosed with abdominal wall pain.  Basically, the though is that my inside incisions healed around nerves, compressing them and causing severe pain.  I was given a steriod shot and it improved enough to not affect my daily life. I was also diagnosed with a 2 cm cyst at this time and the Doctor mentioned the possibility of Endometriosis, but did not want to do a laproscopy at that time.

Last month, I returned to the doctor with the following symptoms: severe bloating, pain on my right side, crampiness low in pelvic area/dull achy all the time, pain with sex, constipation, pain with bowel movements and spotting for several weeks (brownish blood).  I really thought the cyst had grown.  My symptoms were so similar.  However, I had an ultrasound today and the tech only noted one 2.3 cm cyst.

So, my question, does this sound like endometriosis?  I have done some research, but would love to know what women with actual experience think.  I hadn't really given much thought to that possibility until I realized the size of my cyst, which is quite small, considering my symptoms.  Something is going on, of that I am positive.

I have a follow-up next Friday to get the actual results and discuss options.  I am leaning towards requesting the laparascopy to find out what is going on?  Any thoughts on this?  Should I wait longer?  I'm just getting really concerned as symptoms seem to be getting worse.

Any thoughts on what types of questions I should specifically ask the doctor?  I know very little about endometriosis.

Thanks!
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Avatar universal
I received a call from the nurse today.  She said my cyst is a simple cyst...not blood filled and they are not super concerned about it. So, that is good news! However, because of my history and because of my symtoms, I still have an appointment on Friday to discuss doing an exploratory laparascopy.  If it is not endometriosis, it could possibly be adhesions from my surgery last Spring.
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136956 tn?1688675680
I would ask questions such as

1) I would ask what type of cyst it is
2) ask for your surgery report as well as recent ultrasound report

I can't think of many because it all varies on what he tells you.

Contact me any time.. Messaging me would be best as the notification isn't working and I might not see your response..
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Avatar universal
Hi!  Thanks for the response.

The large cyst was a cystadenoma, I believe, not an endometrioma.  I now know that the surgery could have possibly been done by laprascopy and that I may have had a very invasive surgery done, with a huge incision and complications when I could have had a far easier recovery time with a key hole procedure.  Unfortunately, I was too worried and scared (there was a cancer risk) to question the doctor and I didn't do enough research until after the fact.  I now have a new doctor who has been treating the abdominal wall/nerve pain that the first surgery created.  I have not been officially diagnosed with endometriosis, he just mentioned that possibility in October.  Now that my symptoms are severe, I feel that may be what it is, especially since the cyst is probably too small to create all of my symptoms.

I do feel that my bowels may be involved...many of my symptoms seem bowel related.  I was also diagnosed with gastroparesis a few years ago and am now wondering if this is all connected somehow.  The cyst I had before caused a lot of bowel and bladder problems as well because of it's large size.

I am not sure about the type this new cyst is.  I haven't gotten the "official" results or reading from the doctor.  I go in next Friday for that.  The tech just mentioned that it was 2.3 cm and that is all I know.

I'm hoping my new doctor will opt to do the exploratory surgery soon.  He was reluctant to do it back in October because of the surgery I had just had.  He was hoping to rule out other things and do other treatments first before surgery.

After the appointment, I may contact you for information on an Endo specialist near me.

Any specific questions I should ask the doctor?  I feel a bit lost as I know so little about it.  I went in to the whole cyst thing blind and feel I should have asked better questions.  I just want to be better prepared this time,

Thanks!
Helpful - 0
136956 tn?1688675680
Hello, welcome to the Endometriosis Forum. I am an endo sufferer myself and an advocate. I am glad that you have researched this because it is important to be your own advocate.

That being said I have a couple of questions for you,

1) I am assuming that the surgeon wasn't an Endo specialist as most can remove a cyst of that size by key hole but I know things can happen. Do you know if he/she is? Did he excise (cut out) the endo? This is important as it gets the root of the disease. If it wasn't done and just lasered off the top then the root will continue to grow.

2) Did he mention bowel endo by chance? Having that size of a cyst usually there is some bowel involvement but that might not be the case, just curious.

3) The cyst that you have is it blood filled? If it is then that is an indicator of moderate to severe disease.

If you need help looking for an Endo surgeon let me know and I can help you out. What is his name, just curious to see if I have heard of him before.

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