Volume of uterus decreasing

Hi all,


I'm yet to obtain a diagnosis but have had disabling pelvic pain for 18 months + (unable to work etc) many symptoms consistent with endometriosis and adenomyosis but (until a very recent scan -- which I won't describe now as will end up being a too long post for a quick question!) nothing has been visible including two normal laparoscopies.

I'm reviewing all my scan results and surgery reports from the last 18 months because a)I'm seeing a new gynaecologist and I want to have all the info clear to give him and b)I've not had continuity of care because I moved countries half-way through all of this and have also had to change doctors a couple of times for all the normal reasons that anyone here with endo would be familiar with (its all in your head etc etc, I don't have to explain to anyone reading, I'm sure!).

While reviewing my reports I have noticed that the VOLUME of my UTERUS has decreased. It was 62cc (cubic centremetres) in Jan, 2011 and now its 46cc. Does anyone know whether this kind of change/decrease is in the realm of normal or whether it is a possible indicator for a particular pathology/diagnosis?

Interestingly, if adenomyosis is a consideration, the endometrium, itself, is fairly consistent from scan to scan and report to report with minimal changes of 1mm.

Many thanks for any help!
Natalie

Natalie Jane, i was just doing this very same thing yesterday, except for my uterus appeared to be bulky, "suspicious of adenomyosis" in my pathology reports.

What ive learned in my three surgeries (quest for ridding endo) is that there's a game you have to play w these doctors yes even the specilaists. If you dare say you're in constant pain they will tell you it's not endo/adeno related (and suggest to see a chronic pain specialists), and will discourage from helping you but if you say the pain occurs w my period or around ovulation then they will consider helping you. Oh and then you must exagerrate your symptoms (depending if you want surgery or not).

In my opinion doctors are way over rated! You have to take charge of your own health treatment based on what you know and feel, you know you're body the best.

Do lots of research, document your symptoms daily and religiously, stop to take the time to what your body is trying to tell you and listen. then go w what makes sense to you and your gut!

Sorry i don't have definate answers but hope this can help, just my two cents on the matter.

Diana

If you have had two laparoscopies and endometriosis was not found during wither one of them, then probably your problem is not endometriosis and you can rule that out. I would suggest on concentrating on other possible diagnoses at this point and go from there.

The volume of the uterus fluctuates so it may not be an issue that your numbers are not the same. However, if there is a definite permanent decrease in volume it can be from prolapse issues, a thickened endometrium, or possibly fibroids. Having more than one uterus can cause a lower volume but not necessarily a shrinking one.

Remember, volume and size are not necessarily the same thing. There can also be some inaccuracies in the measurements for uterus volume, so if your tests were not preformed at the same facility then different math formulas may have been used resulting in incomparable numbers.

Have you been keeping a detailed symptom diary which can help with diagnosis?

I know it is frustrating to have pain and no diagnosis, but in there and keep talking to your doctors.

Thanks Diana and Weiser for taking the time to respond.

Yes, I would've agreed and have certainly been told repeatedly that normal laparoscopy = no endomoetriosis but all the gynaes agree that my symptoms scream endo. One consideration has always been (but never resolved) the option of endo hiding deep in the septum that just hasn't been able to be seen and this is consistent with where my most severe pain is (I can't sit on my bottom, my pain is very deep, any internal exam or US which touches the back wall has me screaming and crying, SI is impossible). The new gynae is suspicious that maybe previous laps just missed endo or the surgeons didn't recognise an unusual presentation. I don't have private health cover and haven't been able to be fussy about consultants/surgeons but (its too hard to describe the complicated way our health system works) but my new gynae has agreed to see me as a public patient.

I had been ready to acquiesce to closing the door on exploring gynae issues (including endo and adenomyosis) but recently I had an unrelated laparoscopy (I just had appendicitis -- random bad luck) and during the surgery the top of the uterus was seen to be abnormally shaped and the follow up ultrasound showed that one of my ovaries is now adhered to my bowel. Its lucky I had appendicitis (I didn't think I'd ever say that) as I was ready to leave the gynae path after the two normal laps. A MRI in Feb showed that my ovary was close to my bowel but not touching so obviously things have developed since then. Now, I am curious if at previous surgeries there was either microscopic endo that couldn't be seen, really early stage endo that was missed or whether this theory of something hiding in the septum might have legs.

Diane, yes, I've had to fight not to be treated just as a 'chronic pain' patient and though I have constant, daily pain. Even on very high dose narcotics which give me some degree of function most of the month, during my periods I still collapse on the floor, can't get out of bed, sometimes struggle to breathe so gynaecologists have to a degree stuck with me but I completely understand what you're saying.

Weiser, thanks for the practical details re the size/volume of the uterus. Since I've had to 'make do' with some average doctors and finally have a good one I have many, many important questions to ask so don't want to raise additional issues that may not be relevant so, thank you for this information. Fibroids are being queried (the appendix surgeon said he saw them but then they failed to show on a subsequent ultrasound) so I did wonder if the size of the uterus was relevant. The difference in the size (ie measurements) isn't huge from scan to scan (and was in different facilities so I didn't think it was of note) but the decrease in the volume did seem more significant (in terms of the figures) so I did wonder whether I should mention it. Just don't want to appear like a hypochondriac or that I'm unnecessarily worrying about every teeny detail.

Thanks, both, very much.
Natalie

	Quote:
Originally Posted by NatalieJane One consideration has always been (but never resolved) the option of endo hiding deep in the septum that just hasn't been able to be seen ... The new gynae is suspicious that maybe previous laps just missed endo or the surgeons didn't recognise an unusual presentation.

And this all could be true and does happen, but not so much after a couple laps with two different doctors.

	Quote:
I just had appendicitis -- random bad luck

Was careful pathology done on your appendix? I ask because if you do have endometriosis then it might not be "random luck" that you had appendicitis. Endometriosis can and does implant on the appendix and was the reason for my appendectomy.

	Quote:
...the follow up ultrasound showed that one of my ovaries is now adhered to my bowel. ... A MRI in Feb showed that my ovary was close to my bowel but not touching so obviously things have developed since then.

Actually, the ovaries can move around quite a bit. Today the ovary might be in position A, tomorrow it could be on the other side of the uterus. Next week it might not be seen as it is now hiding behind something. So, having the ovary in different places doesn't necessarily indicate a problem. Also, adhesions don't tend to show up on ultrasound. Did the radiologist report say the ovary was adhered to your bowel? My bowel was adhered to my vaginal cuff and it never showed up on a single ultrasound or CT scan over the years.

When you had your appendectomy, no endometriosis was found? Were any adhesions seen? Those can be painful depending on where they are located and they are affecting. Anything unusual besides the fibroids? Was the painful area checked carefully? Is there any chance the pain when sitting is actually your tailbone or something with your spine? I had some issues with sitting (and could come straight up out of a chair) and a CT scan showed my tailbone was at an almost 90 degree angle. Ouch! I had PT and it is so much better now.

Fibroids can cause all kinds of pain and symptoms, depending on where they are located and what they are affecting. And they can be missed on ultrasound as well. Yeah, I know, it gets frustrating that all the testing we have may be pretty inconclusive sometimes.

	Quote:
Now, I am curious if at previous surgeries there was either microscopic endo that couldn't be seen, really early stage endo that was missed or whether this theory of something hiding in the septum might have legs.

You can have peritoneal endometriosis but I would think there would have been other endometriosis evidence. With either lap, were white bubbles noted anywhere? Or bubbles or blisters of any kind? Did either surgeon take pictures that a more knowledgeable surgeon could review? Is your current gynecologist more skilled when it comes to endometriosis? If he finds any, will he recognize it and be able to remove it?

I know this can all be very, very frustrating and I hope your new doctor is going to be especially helpful! Make sure to make a list of every single question you have and see what he might have to say about them!

Hi, I have also been suffering from pelvic pain since Jan this year. As I'm from Ireland we have to be referred to see a consultant by our G.P. so it can be very frustrating having to wait for appointments. My Doc found a large mass in my uterus behind my right ovary & although I've had US, CT, MRI etc., they still don't know what it is! I am scheduled for a Diagnostic Laparoscopy on 24th Aug and according to what they find I might end up having a hysterectomy. My consultant says he doesn't want to bring me back to do further surgery, he will do what ever needs to be done at the time. I need to get rid of this awful pain but I am totally terrified. I've never had an op before & was only ever in hospital once, when I was having my daughter who is now 20. Im not scared of the pain after the op, I think it's more to do with what they will find during the op & what they will remove. I don't want a hysterectomy as I'm only 41, but I want my life back!!!!!! Thanks for listening!! xo