Endo / PCOS cause same pain

PuppyLove · 09-07-2009, 05:35 AM

I met with my Gyno today for post-op appointment. We discussed that my first AF after surgery was excruciating and he said that the first AF after surgery can be horrendous. He said that the next few will tell if the surgery has made a difference.

He told me they didn't find endo and I said I was kinda disappointed as weird as that may seem, but at least it would explain the pain I get. He said that recent research they've done has shown that endo and pcos can create the same pain. That they've operated on women to treat the endo and they've still had the really bad pain, and they've then found she has pcos and operated on that, and it's made a big difference.

He said the pain from both can be exactly the same! This is a revelation to me.

Ashleystar · 09-08-2009, 08:14 AM

Yes, this is confusing. About 4/5 years ago when I was very ill with PCOS I was told my excruciating pain was due to pelvic congestion and cysts on my ovaries. Went on the combined pill. Still got the pain despite having regular bleeds and the US scans showing my ovaries were better. However, I felt the pain I have always had, constantly, and then this year finally got a lap and they found endo. I was pleased as it meant I knew what was going on. I had diathermy to laser off the growths. I had the "chocolate cysts" on my ovaries, which are endo cysts. I don't think endo always shows up in Ultrasounds which is why it was missed for so long. In my experience doctors either said:

"Pain isn't a symptom of PCOS"
"With endometriosis you only get pain during menses, not all the time"

*BOTH* pieces of misinformation!

Of course, with endo, there tend to be related side effects to the pain, depending on where the growths are.

I still have PCOS tendencies, but now endo is what I feel is the worse of the two. What your doctor perhaps meant was that it is very difficult to pinpoint what is going on inside you when you're in pain as it can't be seen, therefore can be misinterpreted. I am glad you don't have endo though!!!

Perhaps you could try approaching this pain as though it were endo. I tend to take my bc pill for 2-3 packets before having a pill-free interval, to give a constant hormone level and to have less bleeds since they are painful and debilitating. This is totally safe to do. In fact I was advised to do it BEFORE I was dx with endo, to make my pain issues less problematic. It really can help once you find the right pill.

Sorry for such a lengthy reply, but I hope it helps you xx

PuppyLove · 09-11-2009, 12:16 PM

Thanks for replying Ahsley

Yep I've also been told pain isn't a symptom of PCOS in the past. This gyn is refreshing, he knows his stuff, he's on the PCOS and Endo boards here in Melbourne and is well revered, so I trust him, which helps heaps!

He said that some specialists had operated on girls for their endo and the pain persisted, they re-examined them and found PCOS, did Ovarian Drilling and the pain went. I'm praying madly it DOES get rid of the pain for me in the next few months. He wants me to have another period, start the pill without skipping the period for 2 months and see how I go. If it's still excruciating, he wants me to skip the period, I guess go back to only having a few a year.

AF is due next week so I guess I'll know soon whether it's any better .... everything crossed!!!!

KatCarney · 09-11-2009, 12:28 PM

Polycystic ovaries that lead to pain are not always the result of polycystic ovarian 'syndrome'.

Some clarity...

Quote:

I thought that any type of ovarian cysts cause pain.

There is a difference between periodic or chronically recurring ovarian cysts that cause pelvic pain and PCOS that is an endocrine syndrome which happens to have small immature follicle cysts in the ovary.

All functional ovarian cysts that are the result of arrested development of an egg are a result of anovulation. These cysts accumulate and persist in the ovary and will show up on ultrasound as multiple cystic areas in the ovary. One proposed classification divides this follicular ovarian disease into two groups (2):

polycystic ovarian syndrome (small follicles usually less than 2.0 cm)
multi follicle ovaries (larger follicles)
- macro polycystic ovaries (multiple cysts larger than the usual polycystic ovarian cysts)
- functional cysts (one to several larger, simple cysts)
- luteinized unruptured follicle syndrome (i.e., and egg that did not ovulate but the cystic area went on to form a corpus luteum gland for support of possible pregnancy as if an egg did ovulate)

Thus if a diagnosis of polycystic ovarian syndrome was made on the basis of an ultrasound rather than an endocrinological basis, you may have one of the other conditions of multicystic ovaries which are associated with pain. (ie, the types of cysts in GROUP 2 above.)

What is pelvic pain like when it is due to ovarian cysts?

Many episodes of ovarian cyst formation not due to PCOS occur on one side or the other but usually not on both ovaries simultaneously. The pain is most often either in the right lower abdominal or left lower abdominal area. If the pain presents on both sides of the abdomen at once in the "ovary" area, there is the possibility of cysts on both ovaries, but it is more likely that the pain is due to vascular congestion, endometriosis or large bowel problems such as irritable bowel, lactose intolerance etc. Pelvic congestion is often associated with a polycystic appearance of the ovaries on ultrasound (3).

Most non-PCOS ovarian cyst formation comes and goes. The natural history of follicular cysts is that about 50-70% regress in 2 months and about another 5% in 3 months (4). On infrequent occasions, ovarian cysts can rupture, causing internal bleeding. This is somewhat more frequent in women over 30 years of age and involves a follicular cyst less often than a corpus luteum cyst (5).

Source: http://www.wdxcyber.com/npain10.htm

Ashleystar · 09-11-2009, 06:43 PM

Thanks Kat!

xx

Ashleystar · 09-11-2009, 06:58 PM

Quote:

Originally Posted by PuppyLove

Thanks for replying Ahsley

If it's still excruciating, he wants me to skip the period, I guess go back to only having a few a year.

AF is due next week so I guess I'll know soon whether it's any better .... everything crossed!!!!

But at least when you only have a few per year due to tri-cycling your pill, there isn't as much pain since your womb lining won't be growing at the same rate (so less discomfort in pelvic area), and there shouldn't be any cysts due to ovulation being suppressed.

Good luck with AF! xx