Just been diagnosed...

Carriedaway · by **Carriedaway** » Fri Apr 27, 2022 3:21 pm

Just been diagnosed with Endometriosis, im so confused i dont know what to think!
I have been in and out of hospitals the last year and a half with pains and as a last resort they took my apendix out last month, I went back to see the surgeon today and he said he found 2 growths on the apendix and sent them off to be tested and they have come back positive for endometriosis. He said he had a look around while he was in there and couldn't find any more growths. He's referred me to a gynecologist now.
Im getting married in 4 months and i wasn't planning on having babies any time soon , maybe 4-5 years, im 28 in June. Im terrified now that I wont be able to concieve if i wait but at the same time I really dont want a baby in the near future :o(

I haven't told anyone yet I came straight into work after the hospital and haven't spoken to any one. I'm relieved I finally have answers after all the tests but this was not the results i was hoping for.
Just wanted to get that off my chest

babydust2012 · by **babydust2012** » Fri Apr 27, 2022 3:38 pm

Couldn't read and not reply, I have no experiences of Endometriosis myself or within my circle of friends or family but I just wanted to say hang in there and don't give up on the TTC journey. You are young and healthy and everything is in your favour. I hope some other Wollie can give you some further reassurances

lovebnmrsg · by **lovebnmrsg** » Fri Apr 27, 2022 9:14 pm

I'm a fellow endo sufferer, likewise I was in to doctors, a&e and consultants before someone decided to do a laparoscopy and hey presto, endo growths. I have to be thankful I have my little boy in my arms and I conceived easy enough. However there are ways to help fertility-i have a friend who had laser therapy to get rid of the endo growths and shr fell pregnant shortly after so all is not lost on the fertility front. I control the endo pains with the pill. The period pains I get when on the pill would be still quite painful but nothing compared to how they are when I'm off the pill. Any questions ask away. Hope you're ok x

Carriedaway · by **Carriedaway** » Fri Apr 27, 2022 11:08 pm

Thanks guys I'm just in shock because endometriosis wasn't even on the table it was supposed to be ibs and my apendiz. They took the appendix out out during the laparoscopy and I've felt great since so I thought I was ok but turns oubut the endo growths were on the appendix which is why I felt better when they took it out.
I've been referred to a gynecologist so I guess I won't know anything until I get to see him.

lulu126 · by **lulu126** » Mon Apr 30, 2022 12:39 pm

Carriedaway I couldn't read and not reply. Please don't panic!

I got diagnosed with endometriosis at the age of 22 after an endometrial 'chocolate' cyst threatened to twist my ovary clean off involving emergency surgery at 5am! Like you I had no symptoms of anything like it before then. I've been able to manage it ever since with the pill and have needed no further intervention since and I'm 28 now. The pill also stopped the outrageously painful periods. I'm just starting looking into TTC for after my wedding now and my GP's been great and referred me on to the right services just to get things checked out. My mum also had endometriosis (worse than mine- mine is mild from what I understand) and she had 2 kids naturally so please don't worry yet.

Please don't hesitate to PM me if you need any info.

Carriedaway · by **Carriedaway** » Tue May 01, 2022 9:57 am

Thanks lulu thats made me feel a lot better :thnk

I found out over the weekend my dads two sisters had it and both had to have hysterectomies in their 30's so I was panicking even more, but I suppose that was back in the day when they probably didn't know too much about treating it.

niftythrifty · by **niftythrifty** » Thu May 03, 2022 10:09 am

You should ask your doctor for some advice on this. Don't panic re TTC- you are still young and shouldn't rush into having children for this reason. Hugs

Donnachain · by **Donnachain** » Thu May 03, 2022 1:27 pm

PM'd you

Lolly83 · by **Lolly83** » Fri May 04, 2022 1:31 pm

Hi ladies,
There are fertility tests you can do in advance of ever planning anything, that could give you peace of mind. One is to get your AMH tested, it's a snapshot of the quantity and quality of eggs you have in your reserve at that time. Endo can affect your egg reserve (which is what has happened in my case) and the test will tell you if you've got loads left or smaller numbers. I had the test done with the Fertility clinic in Kilkenny, can't recommend them enough and there were no major waiting lists to deal with. They can also do tests to check if there might be potential issues with your tubes etc.
I would go ahead and get some tests scheduled, you can refer yourself to a lot of the fertiliy clinics without having your GP's referral. My story is worst case scenario of this, we've been going through some really tough months since looking into this in Nov so won't go into the details, but I'd strongly urge anyone planing on waiting before starting a family, to get your self checked out in advance - while time is on your side.

Carriedaway · by **Carriedaway** » Fri May 04, 2022 4:20 pm

Lolly83 wrote:Hi ladies,
There are fertility tests you can do in advance of ever planning anything, that could give you peace of mind. One is to get your AMH tested, it's a snapshot of the quantity and quality of eggs you have in your reserve at that time. Endo can affect your egg reserve (which is what has happened in my case) and the test will tell you if you've got loads left or smaller numbers. I had the test done with the Fertility clinic in Kilkenny, can't recommend them enough and there were no major waiting lists to deal with. They can also do tests to check if there might be potential issues with your tubes etc.
I would go ahead and get some tests scheduled, you can refer yourself to a lot of the fertiliy clinics without having your GP's referral. My story is worst case scenario of this, we've been going through some really tough months since looking into this in Nov so won't go into the details, but I'd strongly urge anyone planing on waiting before starting a family, to get your self checked out in advance - while time is on your side.

So sorry to hear that lolly

, thanks for the advice that's a really good idea for putting my mind at ease, i've been referred to a gyne so i will definitely be asking him about this when I go there. I didn't know you could do those tests, that would really put my mind at ease.

Bellabing · by **Bellabing** » Sun May 06, 2022 1:12 pm

Carriedaway so sorry to hear about the rough time you've been having

I have endo, stage 4. I have lost function in 1 kidney, had ovary removed, lots of pain for last 20 yrs and in the last yr have bladder pain also.
We have done 4 IVFs and all resulted in BFN.
The reason I felt I had to post is that I've seen many many gynaes in top Mat Hospitals in Dublin and throughout the country over the last 20 yrs and none of them could help me. I was told just to continue with IVF, which wasn't working. I have been looking for a Consultant that is dedicated to endo and not an obs/gyn that delivers babies and does the odd laparoscopy.
Recently I came across a post on rollercoaster about an info day on endo at the Galway Clinic, I attended and the guy who organised the day is a gynae surgeon that specialises in endo and ongology, he also performs robotic surgery. He was the Dr I've been looking for for so long.
I had appointment with him 2 weeks ago and I am in on Tuesday for a diagnostic laparoscopy, hysteroscopy, cystoscopy (bladder), MRI and CT scan. He is also organising a colonoscopy to see if it has spread to the bowel. At last I will have a full picture of what is going on inside me after years of being fobbed off by gynaes that didn't know enough about endo. Once he has an idea of how things are inside he will then decide if he can do major surgery on me using robotic surgery to clean the endo out while maintaining my fertility.
The surgeons name is Mo’iad Alazzam.
Here is the link to the rollercoaster thread http://www.rollercoaster.ie/Discussions.aspx?ForumThread=141297243
I am 38 and i'm just glad I found this surgeon now and not in a few years. From all my research this guy is the only dedicated endo surgeon in Ireland.
Best of luck
xx

elliesunn · by **elliesunn** » Thu May 10, 2022 8:54 pm

hi carriedaway, i can completely sympathise with you over your diagnosis and just had to reply when i read your post....this year i was diagnosed with endometrosis and felt like my world had ended as i had one child but wanted to have more children in the future.....after going through a very difficult time with no-one knowing what was wrong with me i was referred to Mo'iad Alazzam in the Galway Clinic, he is an excellent surgeon...he is very personable and explains everything to you....i saw him straight away and within a few weeks I was in for surgery and am on the other side of it now and am so glad i met someone that knew what was wrong with me and that could help me..if you can make the appointment to see him do and think positive, its not the end of the world, it will all work out for you....if you go onto the Galway Clinic website you will find his contact details....best of luck and please let us know how you get on...

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