Endometriosis advice....
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Category: Support
Forum Name: Coping with infertility
Forum Description: Have you been trying to conceive unsuccessfully? Dealing with primary or secondary infertility? Get support, advice, and help coping here.
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42054
Printed Date: 05 June 2024 at 7:43am
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Topic: Endometriosis advice....
Posted By: ajs29
Subject: Endometriosis advice....
Date Posted: 17 May 2012 at 9:49am
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I have been suffering from excrutiating periods since the birth of my daughter nearly 2 years ago.
Up until getting pregnant I had been on the pill for 10 years so hadn't been getting my periods. I only had one period after stopping my pill before becoming pregnant - lucky me! I finally plucked up the courage to see a female GP about my pain, and she suggested I might have endo, which is something that had never crossed my mind. She has put me back on the Pill and prescibed Naxproxen but this doesn't seem to be working :( I am still in agony and feeling sick. What should I do? shall I push for a referral to a gyno? I just don't want to be a hypochondriac... also we will probably want to get pregnant again next year so I don't know if I should pursue this until after another baby. It would be nice to have a proper dianosis - I have been suffering in silence and feel relieved that finally someone has taken me seriously. How were other people out there diagnosed???? and what do you do to help the pain? |
Replies:
Posted By: _Lou_
Date Posted: 17 May 2012 at 10:02am
Hi ajs, welcome to OB! Sounds like you have some pretty painful period's, poor you it really is no fun!
I was diagnosed with stage 3 endo in February this year. The only real way of diagnosing endo 100% is by having lap surgery. I had 2 laps done, one was in September last year where they thought everything was fine, and the other was in Feb this year where they found the endo was in quite obscure places. I had it all removed in the same op. It was a bit of a shock to me as I didn't have a lot of pain with my periods, definitely painful, but not always excruitiating and could normally just pop a couple of pills and be ok. Sometimes it would be worse but not often. If you have been suffering with it for that long, I would say see a gyno. Going on the pill may help for now, but it's not a long term solution and suffering that much is not cool! Good luck 
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Posted By: ajs29
Date Posted: 17 May 2012 at 10:16am
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Thanks _Lou_
interesting to see you had 2 laps done and they thought everything was fine with your first one. I think I'm going to go back to the GP and if she doesn't refer me then I will book an appt myself. Does anyone recommend a good Gyno in Chc? I had a good male Ob/Gyn when I was pregnant but think i would prefer a female.... 
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Posted By: nigella express
Date Posted: 18 May 2012 at 8:32am
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Hi I just wanted to add I am seeing an acupuncturist who specialises in womans health and we have talked about how much acupuncture can benefit woman with endo. Maybe you could look into acupuncture treatments to help with the pain etc but also possibly see another doctor aswell. Especially if you are thinking of TTC soon. Acupuncture can also help regulate your cycles and prepare your body for pregnancy. Best wishes. ------------- TTC:8 years IVF cycle1:BFN IVF cycle 2:BFN FET:BFN 2007 FET 2 embys BFP/mc 1 at 10wks Oliver born 2008 FET March 2012 BFN FET april 2012 BFN FET May 2012 BFN me 38 DH 43 |
Posted By: nigella express
Date Posted: 18 May 2012 at 8:33am
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I would also push to see a Gyno! ------------- TTC:8 years IVF cycle1:BFN IVF cycle 2:BFN FET:BFN 2007 FET 2 embys BFP/mc 1 at 10wks Oliver born 2008 FET March 2012 BFN FET april 2012 BFN FET May 2012 BFN me 38 DH 43 |
Posted By: Sag76
Date Posted: 19 May 2012 at 6:12am
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Go the gyno...
i had really bad period pains/cramping (3 weeks of the month) and i just thought it was normal but its not ;-) And I only have 'mild' endo... good luck! ED: for pain - alternate between neurophen and paracetmol when its bad...hot water bottles...nothing really works for me though :-( |
Posted By: mezze
Date Posted: 25 May 2012 at 11:11am
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Your story sounds identical to mine, however I refused to go back on the pill as we wanted to have #2. I've tried various pain meds with no relief. The thing with endo is that as long as you are having periods the pain will probably get gradually worse - which is what I am finding. The only way to help the pain is to get a diagnoses and have it excised (via lap surgery). It cannot be picked up via ultrasound.
Definately get that referral to a gynae, pref someone who specialises in Endo. Contact www.endo.org.nz they will be able to help with recommendations on who to see. I have had my appt with Gynae, and she's recommended Lap surgery, I am now just saving so I can go privately and get it done asap. You don't have to suffer, and don't leave it. |
Posted By: mezze
Date Posted: 25 May 2012 at 11:12am
| sorry that address again - www.nzendo.co.nz |
Posted By: ajs29
Date Posted: 27 May 2012 at 9:02pm
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Thanks for all the replies
so nice to get some good advice. I might have to look into the acupuncture - had been considering it for my knee pain, it might solve all my other problems too! No pain killers seem to work so it's worth a try. mezze, please let me know how it all goes with you. Fingers crossed you can go ahead with getting your Lap soon. Good luck! I'm especially interested since you sound so similar to me. I will update once I've been back to the GP
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Posted By: Mintyfresh
Date Posted: 06 June 2012 at 11:59pm
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Hey, just wanted to mention that the Oxford clinic in chch are very good - my gyno is Dr Brown, she is lovely and very talented. I had stage 3 endo, and she removed a very large chocolate cyst sac from one of my ovaries, which evidently is very difficult.
Dr East is also reputedly excellent, but I used to work for him when he owned Muddy Water, so felt I'd prefer to see a gyno I didn't know in my working life. ------------- http://lilypie.com" rel="nofollow"> 
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Posted By: ajs29
Date Posted: 21 June 2012 at 11:20am
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Thanks for all the advice
I have been to see the specialist today (Michael East at the Oxford Clinic) and he was very good. My US looked good, he suspects I have Adenomyosis, and maybe a polycystic ovary. Aparently Adenomyosis can be common after C-sections. There isn't a lot that can be done at this stage, apart from a minipill and Naproxen. If I have trouble TTC then I need to go back. Once I am finished having children then a mirena will be a good option, or last resort hysterectomy. I feel relieved that everything 'looks' good and I have an answer. Also that I'm not a hypochondriac is also a relief. It is definately not normal to feel the way I do every month, and although not a lot can be done about it I feel better knowing what my possible cause of pain is. 
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Posted By: LuckyRed
Date Posted: 04 July 2012 at 4:08pm
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Mike East was my gynae for endo as well, he's fantastic, great you have some answers -------------  
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Posted By: ajs29
Date Posted: 25 January 2013 at 10:10pm
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wow, it seems ages ago since I first posted here back in May. Since then I have have been on what feels like a rollercoaster! After trying numerous painkillers and pills I had had enough of the side effects and the pain and pushed to see the gynae for a second time in October. I had a Lap late November and he discovered adhesions everywhere from previous surgeries (appendix and c-section), my bowel was tied up like string. One ovary/tube in the wrong place and bent like a hose and the other had a huge cyst that required drilling. He also excised stage 1 endo. Apparently it looks like I have had endo my whole life. I cannot describe how happy I was to find out what was discovered - I was so relieved! I am still experiencing some pain but it is still early days. We are TTC atm, so fingers crossed everything will now be working as they should :) I trusted my instincts, IT IS NOT NORMAL TO LIVE IN PAIN! and have also read the book by Deborah Bush - its great. I have also changed my diet and find being GF is helping. |
Posted By: reddahlia
Date Posted: 22 May 2013 at 10:37am
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I see it's been a few months since you posted - but you must have been so glad to get it looked at and have the reason for your monthly pain confirmed ajs29 (not that it is good to find out you have endo). I had a laproscopy mid last year for suspected endo too. I had been booked in for this years ago but the surgeon felt that I 'most likely' didn't have it, so I hadn't gone ahead with the lap back then. Even though I have always suffered with extremely bad period pain I guess I still managed to somehow 'soldier on' and not complain too much. So I had the lap and they found the most severe stage endo everywhere! Luckily my tubes were still intact and the dye test showed they are not blocked (thank goodness). My surgeon worked on me for a very long time and was very thorough. I am soooooo glad I went ahead and had the lap as I now have the most pain-free periods -it is like having a whole new body - so this is how other people without endo find AF. It really is just a small amount of minor discomfort now. I'm hoping it makes a difference with TTC too, but it has been 9 months since so.... |
Posted By: Hopeful75116590
Date Posted: 27 May 2013 at 2:33am
| Having my lap at end of the week have had a really sore AF this time horrible pains at night esp only goes away with nurofen nothing else works. Wondering if I've had endo for years always have pain right across my abdomen often starts few days prior I've probably had it for years but assumed the pain was normal and just got used to it and dosed up on pain killers as you do. I had AF like this as a teen too not as bad when I was on the pill right through my 20s - mid 30s though only get bad heavy one with cramps occasionally. When you say obscure places what do you mean by that? Really hoping he does not turn around and say it's normal as he looked in the wrong place and I have another long wait ahead of me for some answers... hoping everything goes well bit freaked out endo combined with my age 38 could be really bad news for us TTC for last 3 years now |
Posted By: ajs29
Date Posted: 20 July 2013 at 9:24pm
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Hi Hopeful, It's been awhile since I looked at my Ohbaby and have just seen your post. I do hope your lap went well, and you got the results that you wanted. Hopefully now life will be less painful! Best Wishes
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Posted By: ajs29
Date Posted: 20 July 2013 at 9:36pm
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Just to update, Since my lap quality of life improved immensely, and I was not having to take as many painkillers and had no more other hideous bowel and nausea problems. I had an early miscarriage in Feb, and we conceived again 2 cycles later, I am now 19 weeks pregnant! (The last AF I had I felt like a 'normal' person, almost completely painfree and light. I raved to my Dr about it!) Scans so far show all is well. However looks like I still have a large cyst on one ovary - perhaps drilling wasn't successful. So it means I have only one ovary working as it should. I feel so incredibly lucky to be pregnant within the 6 months after my lap. And I am enjoying having a holiday from AF...I am dreading getting it back! I hope everyone who replied to this thread are doing well. And wish those TTC the best of luck, hopefully you have your BFPs soon! |