Not quite sure what to do (medical, TMI)
Printed From: OHbaby!
Category: General Chat
Forum Name: General Chat
Forum Description: For mums, dads, parents-to-be, grandparents, friends -- you name it! And you name the topic you want to chat about!
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=17809
Printed Date: 06 October 2025 at 4:57pm
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: Not quite sure what to do (medical, TMI)
Posted By: busymum
Subject: Not quite sure what to do (medical, TMI)
Date Posted: 01 June 2008 at 7:52pm
|
(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! -------------  |
Replies:
Posted By: Rachael21
Date Posted: 01 June 2008 at 8:18pm
|
I could be wrong here (my friends dad has coeliacs and she has been tested a few times) but with coeliacs isn't it if you avoid gluten it doesn't show up but once you have it you have it for life so would show up anyway? My friend hasn't been diagnosed a coeliac but is gluten intolerant and has been told she will pretty much develop it at some point in her life.
So if I was you I would go to the dr and explain about what happened when you cut out gluten and see if you can get a referal for a dietition from that. My sis has actually just cut gluten out of her diet too and she has IBS, endo and PCOS and she said it has made the hugest difference for her I'd say your on to a good thing. Good luck and I hope they manage to sort it all out so your pain goes. |
Posted By: mummyofprinces
Date Posted: 01 June 2008 at 8:22pm
|
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.  -------------   
|
Posted By: busymum
Date Posted: 01 June 2008 at 8:27pm
I didn't quite get what you said but I think it might be the same as something melnel said. Otherwise can you rephrase? Ta
Yea, that's what I found out after I had the blood test done (whoops!)
That confused me too. It felt the same (but reduced) as any other Ov and was at the same time each month. Maybe the constipation just gets worse around that time? I dunno! ------------- |
RachandJack wrote:Posted By: FionaS
Date Posted: 01 June 2008 at 8:28pm
|
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. ------------- Mummy to Gabrielle and Ashley |
Posted By: peanut butter
Date Posted: 01 June 2008 at 8:47pm
|
Now somewhere in the depths of my memory (ok not too deep) I thought someone was told to really load up on gluten before a test. Prob worth mentioning to your doc and also how about a diary of what you eat, what happens etc so you can really prove your point. Also you might not be coeliacs but still have an intolerance. |
Posted By: mummyofprinces
Date Posted: 01 June 2008 at 9:02pm
|
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 -------------
|
Posted By: MrsMojo
Date Posted: 01 June 2008 at 9:05pm
As you know from our emails this is what happened to me, I had a negative blood test but had the endoscopy anyway and that's when I was diagnosed coeliac. Can you go private for the endoscopy? If you do get the endoscopy done I'm afraid (as others have mentioned) you're definitely going to have to load up on gluten before the tests. The only definitive way to diagnose coeliacs disease is to prove that you have damage to your stomach lining. The wonderful thing about it is, if you are coeliac, once you follow a gluten free diet the stomach and all of the other mil to extreme syptoms you've suffered consciously and subconsciously for years will repair themselves. -------------  
|
Posted By: busymum
Date Posted: 01 June 2008 at 9:14pm
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 ------------- |
Posted By: scarecrowfarm
Date Posted: 01 June 2008 at 9:52pm
|
Endo sufferers often have food sensitivities. Check out www.endo-resolved.com. They have something on there called the endometriosis diet and it cuts out wheat, sugar, eggs, dairy, meat and basically anything that is typically allergenic.
So yes, you could have endometriosis and the fact that you are eating differently could be reducing your pain levels. I have endometriosis (without many symptoms) and I was on an endometriosis board on Fertility Friend. There were several women doing the endo diet and the majority of them reported feeling less pain while they were on it. The frustrating thing about endo though is you can be practically symptomless and have very severe endo, or you can have lots of symptoms but have no endo. For me personally I just had a niggle/pain in my level ovary that changed in intensity throughout the month from about a 1/10 (i was aware of it if I thought about it) to about a 3/10 (not majorly painful but somewhat uncomfortable and harder to ignore). The worst times were generally around ovulation and in my luteal phase. It usually disappeared before AF arrived and I hardly ever had pain/discomfort with AF. I did have pre-AF spotting for several days however and was dealing with infertility. My endometriosis was between stage 2 and 3. Endo is commonly linked to the bowels, but in my case it wasn't. ------------- Robyn www.scarecrowfarm.co.nz |
Posted By: MrsMojo
Date Posted: 01 June 2008 at 10:00pm
|
Sorry, no idea what the endo costs privately -------------
|
Posted By: scarecrowfarm
Date Posted: 01 June 2008 at 10:10pm
|
Just realised I missed a couple of questions.
1. I had a laparoscopy done privately. It cost $8000 but was covered by medical insurance. My op was 2.75 hours, and they initially estimated 1.5 hours so it ended up being more than the quote I was given due to the increased theatre time. The surgeon kept his fees at the same level though. 2. One of the tests I had prior to getting the laparoscopy was something called a CA125 test. It's actually used to test for ovarian cancer but slightly raised levels (as opposed to significantly raised levels) can be an indicator of endometriosis. The test is pretty unreliable and subject to a lot of fluctuations at the best of times. Mine were just above the expected healthy range but it was enough for me to realise that the specialist was likely on the right track with her diagnosis. 3. Sometimes endo can cause a retroverted uterus. i.e. if there is a lot of scarring and adhesion it can change the position of your uterus. it's not necessarily the cause, but it can be an indicator, especially when combined with other things. Where do you live by the way? If you live in Auckland I could give you a different specialist recommendation. ------------- Robyn www.scarecrowfarm.co.nz |
Posted By: emz
Date Posted: 02 June 2008 at 12:13am
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!)
|
Posted By: busymum
Date Posted: 02 June 2008 at 10:23am
|
emz, I haven't had a lap at all. Does PCOS show up on scans? I don't know much about PCOS but I think I might be too regular (in my cycle) to have it. ------------- |
Posted By: fire_engine
Date Posted: 02 June 2008 at 12:45pm
|
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. ------------- Mum to two wee boys |
Posted By: emz
Date Posted: 02 June 2008 at 3:39pm
|
PCOS can show up on scans but they're not that reliable, they couldn't even see one of my cysts (2-3cm) until they did the lap. Just like a diagnosis of endo shouldn't be trusted just from a scan (thats what my specialist said anyway).
Hope the gluten-free diet works out. I *should* be doing gluten-free but we just can't afford it so I just avoid most of that stuff like the plague (although I'm known to splurge and then pay for it later lol) |
Posted By: mummy_becks
Date Posted: 02 June 2008 at 10:25pm
|
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. ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: Peace
Date Posted: 03 June 2008 at 2:09pm
What about ditching the Dr and going to a health shop, natropath or homeopath? I mean you seem to have hit the nail on the head really with your own diet needs and what not and to read your story (sorry you have had to go through so much BTW  ) it doesn't sound like you are getting much help with the western Drs IYKWIM?! I mean gluten intolerance is managed through diet anyways, maybe some homeopathic remedies can help you with the rest?
I have just decided to go mostly gluten free myself to see if it will improve my weight and fertility chances, it's a blinking hard road but I do feel better in myself for not stuffing in the breads etc. Anyways! Best of luck ------------- DD1 May 2006 DD2 March 2011 DD3 August 2012 |
Posted By: ginger
Date Posted: 03 June 2008 at 2:48pm
|
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! ------------- Cuinn Lachlan 23.1.09 - 22:00 Antonia Helene 4.8.11 - 09:41 |
Posted By: busymum
Date Posted: 03 June 2008 at 6:32pm
|
Okay so I went to the dr this afternoon (btw I didn't see any of your replies today cause I was at work) and he thinks it's an intolerance too and that we don't need to pursue the endo thing for now. Basically it could be coeliacs or gluten intolerance or wheat intolerance, still a lot of narrowing down to do. He said what you all said about the blood test being a bit useless (whoops!) and has told me to stay off gluten for 4-6 weeks, after which time to do a gluten challenge "until my wheels fall off". At that point I need to try oats (as in, porridge) as they contain gluten but not wheat, and see if that causes any difficulties. Basically it will be a week(?) of eating everything containing gluten that I've missed
Thanks for all your replies and support! Now I have to educate myself (more so) on what things contain gluten. At the moment I'm stuck on vinegar (all the different types) and worcester sauce! And I just *need* a recipe for biscuits so I don't have to miss out on afternoon tea at work
In the meantime, we're due at a family dinner this weekend and I have to educate my mum as well! Phew! ------------- |
Posted By: mummy_becks
Date Posted: 03 June 2008 at 6:32pm
|
If you did want to go the natural way then you could see the lady in Terrace End who is also an endo lady. ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: busymum
Date Posted: 03 June 2008 at 7:05pm
|
Yes I remember her - Margaret.
Becks we posted at the same time, not sure if you've seen my last post on pg1 ------------- |
Posted By: mummy_becks
Date Posted: 03 June 2008 at 7:18pm
|
I have read it now - good luck on educating your mum. I am sure there are recipes out there for biscuits that are wheat and gluten free. ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: busymum
Date Posted: 03 June 2008 at 7:43pm
|
Found a few in the last hour, gonna try my luck! ------------- |
Posted By: fire_engine
Date Posted: 04 June 2008 at 10:26am
|
Try the http://www.colourcards.com/coeliac/ - Coeliacs Website for info about gluten free food etc.
Good luck! I've got several sisters with Coeliacs (always triggered by pregnancy) and hope to NOT join them after this one arrives! ------------- Mum to two wee boys |
Posted By: busymum
Date Posted: 04 June 2008 at 6:48pm
Triggered by pregnancy!  Never heard of that, must be rather daunting in your position!------------- |
Posted By: mummy_becks
Date Posted: 04 June 2008 at 6:51pm
|
That might make sense thou T, maybe it was triggered from the 3 babies quite close in age??? ------------- I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived! |
Posted By: busymum
Date Posted: 04 June 2008 at 8:23pm
|
Who knows! But I do have an aunt with coeliacs and I have excema (at times) so I'm guessing I had predisposition anyway.
The thing that gets me is, what about my kids? There's something about hyperactivity in kids and gluten intolerance, and it just makes me wonder about Briona... or is she just a crazy kid? IYGWIM. If you don't remember her much, think of Ayja!!  ------------- |