Not quite sure what to do (medical, TMI)

(For those who know the background, feel free to skip to the end! Otherwise it's there for reference.)

I've been having very painful ovulations, constipation and bloating since June 07. The Ov pains got worse from month to month. I saw a dr in Oct 07 and asked her about fibroids (cause my mum has them). She basically ruled out fibroids by feeling around but put me on the public waiting list for an abdo scan.

In November, I went back to my gp requesting a private scan (to speed things up) and brought to him concerns about whether I might have endometriosis. He put me on the BCP, referred me to a specialist at the hospital, and encouraged me to have the scan to rule out anything else.

Early December 07 I started the BCP, scan was clear. Mid-cycle pains hugely reduced with the Pill but they continued to get worse each month and in Feb/March 08 I started taking nurofen again.

In late March/early April 08 my constipation got so bad that I deliberately overdosed on Vit C tablets (and fruit as well!) so I would 'go' I started eating differently: yoghurt and fruit every breakfast and salad with tuna every lunch. Constipation still there but less painful. Beginning of April I am told that my aunt has coeliacs disease (can't have gluten).

Came off BCP around 20th April. I monitored the next cycle for the specialist: over a period of 7 days around Ov I took 27 nurofens and 18 panadols. And that was basically a "normal" no-BCP cycle for me (since 2007). Cause for concern!

Saw specialist mid-May (just after Ov), he told me that I likely don't have endo because my pain is worse at Ov instead of AF (in fact, my AF's are almost a relief because they are so insignificant compared to Ov's) and because of my fertility history. (I actually don't place much stock in his words because I felt that he didn't know much about endo at all, and I corrected him on a couple of points! But what he said next made me think.)

He asked me if anyone else in my family had endo and the answer to that is that all the females in my family that I know of have issues with their bowels and AF, but none of them have seen a dr yet - I'm the guinea pig - except for one aunt who has been diagnosed as coeliac. He jumped at that and sent me back to my GP seeking blood tests to rule out coeliac disease. I said, if it's just coeliacs that doesn't explain the Ov pains, and he sent me off for an Ov scan to see if I had oversized cysts. He basically indicated that he wouldn't be doing anything about suspected endo at least until those were ruled out.

Scan last week showed everything clear except that I have a retroverted uterus - but only when my bladder is empty. (That would explain why I feel AF's in my back and the deep penetration issues which I thought might be endo in pouch of douglas.)


OK here's the bit you need to read (LOL sorry I write too much!):
I've now been having fruits and salads for breakfast and lunch for about 6 weeks. I had a coeliacs blood test about two weeks ago which came up negative. I'm wondering if I had stuffed up the blood test by eating so little gluten at that time (unless 3 crackers and 3 biscuits a day counts ;). I don't have that much gluten anyway but over the last couple of days, since my Ov started up, I have made sure I have eaten no gluten at all. Not even chicken stock. And do you know that I have just finished Ov today having had only 2 pain tablets in the last 3 days? My pain is so much less and I think it's the gluten.

I was talking with my Nurse last week about still being so constipated and she suggested a few remedies for that, one being wheatgerm. Because I was wondering about coeliacs, I gave wheatgerm a go. Just 1 or 2 tsp on my breakfast, on two separate days. It gave me the worst headache ever and I felt nauseous.

So I'm going back to my gp on Tuesday and I'm wanting to ask for further gluten intolerance tests. I'm 99% convinced that it's not endo after all. But what if it is endo? Cause 75% of endo ppl have trouble with gluten anyhow, so it could be that I have both. A friend of mine with endo very bad said she would want to schedule endo surgery or at least a follow-up with the hospital now (since it'll likely be another year on the public waiting list), so that I can still have a lap to confirm there's nothing in there, cause some endo ppl don't have any symptoms either. But I'm not sure, you can't just lap anybody because not everyone gets symptoms!

If nothing else, I want to be referred to a dietician for a gluten-free diet and give that I try for 6 months - by which time I am almost certain that I will have no more abdo pain. The difference between the last year of Ov pains and this weekend... I mean, this weekend was heaps better than mid-cycle on the Pill!

(You know the weird thing... I'm still constipated after all that!)

What do you think I should do/talk to the GP about?

Edit: to try shorten this post!

Edited by busymum

A very quick note, my MIL is being tested for coeliacs and her gp told her NOT to change her diet as this would effect her results.

BT came back +ive for coeliacs and she is now scheduled for more tests.... Based on that, might be worth having a chat to your GP about retesting..

I didnt think you ovulated when BCP, kinda thought that was the point of it....

Not very much help, but hopefully you get some answers soon chick.

The blood test for coeliac markers is very unreliable. A biopsy is the only definitive test. I have 2 friends who had a negative on that test but later had a biopsy which confirmed that they did have the condition.

You do need to have gluten in your system for the blood test to work.

Perhaps try removing all forms of wheat / gluten from your diet for 6+ weeks and see how you go. If you are convinced it is the wheat then perhaps just proceed as though it has been confirmed and see how you go.

Actually this got me thinking, I was put on BCP when I was 18 for suspected endo and the only time I have ever felt ovulation pain was then.

Huh?!

Yet when i came off BCP i didnt ovulate for 6 months and didnt have pain. I wonder if the hormones confuse the body enough to get that little egg ready, just not release it????

I still dont have any ovulation pain... very weird.

Sorry for the wee hijack

I kinda want a diagnosis because then I have a 'definite' and will be less tempted to give in to yummy things!! Also if there's any subsidies and double-also cause it will help my girls if they have probs in the future.

Any idea on how much an endoscopy costs privately, Jo? I think I'd be ok with loading up on gluten first if I know it'll only be for x amount of weeks. In the meantime, I'm going the pain-free way LOL

Sorry, no idea what the endo costs privately

Sorry can't remember but did you have a lap to rule out PCOS? That's the most common one I could think of which would explain the intense ov pain. I can actually feel what side I ovulate on and whether or not the egg attaches to the rest of the cyst or carries on its merry way. The worst ones are when cysts pop though

I have PCOS, IBS, funny-shaped uterus, uterine contractions (loss of blood supply) and the beginning stages of Endo (at last lap wasn't enough to scrape away). I have found that many people with PCOS or endo also have IBS. You can also have inflammatory bowel, but you would need to have a colonoscopy to diagnose that.

My dad's been in and out of hospital for the past few weeks as he's ripped from his oesophagus to his bumhole because of 'something' possibly coeliacs or chrons. I think there's a lot of other things you get with both not just the gluten thing. My cousin however has PCOS and gluten-intolerance and she has what is similar to what you're describing.

Try not to self-diagnose though. Google is NOT your friends I went through 3-4 years of tests and ops before they finally decided what I had. I don't think many good doctors would rely on bloods alone to diagnose something, they should be looking at the bigger picture. Hope you get some guidance when you go to the doc's though, it's not fun having to deal with this (I sometimes wish I was a man - they have it so easy!)

Am with the others - you need to be eating gluten for the blood test to show up positive. Biopsy is the definitive diagnosis of coeliacs, but again like mrsMojo said, you need to be eating gluten cos avoiding it repairs the damage to the intestine. There is a fairly long coeliacs continuum, from those who do have true Coeliacs disease (as shown by the biopsies) through to gluten intolerance of varying degrees, so even if you have a -ve biopsy, you may well still be better off avoiding gluten.

OK so I did skip through what you wrote till the end as I do know most of it.

As a side thought as the spec says you don't have endo maybe it would be worth getting health insurance now so that the other tests can be done privately (who you still may have stand downs for them too as you have spoken to your dr about them).

I would ask your dr to get refered to have the proper testing done that Fiona has spoken about.

There is an incredible Chinese herbalist down there busymum - Shelly Sun her name is, and I think her practice is Evergreen Herb. I travelled from Akl to P Nth to see her and she was great. She treated my Dad who is a diabetic and had him off diabetes medication within about 12 months!