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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Just been diagnosed with endometriosis :(

46 replies

hopingforamiracle · 31/12/2014 22:28

I'm 23 and just had a laproscopy which found stage one minimal endo. It was on both ovaries, pelvic wall and womb. I'm terrified of not being able to have children. I always had a gut feeling I would have difficulty having children, my worst fears have been confirmed.

I've done some googling (big mistake) and all I can find is stories about women who struggle to conceive, some need expensive treatments, some try for years before finally getting pregnant.

I really don't want to go through all that :( I've had terrible luck in life and now this is just making me feel hopeless.

OP posts:

ILoveYouBaby · 01/01/2015 06:19

I've got endo. It took two years to conceive, had a mc. Then got pregnant almost straight away with dd. And I'm now pregnant again even though we weren't trying. According to my fertility consultant, I was highly unlikely to get pregnant naturally, so it goes to show anything is possible.

fishybits · 01/01/2015 06:21

I have endo, PCOS and a child.

Aghaidh · 01/01/2015 07:02

I believed the doctors too when they said that getting pregnant with endo would be very difficult. Had the mirena put in to try and control it, which it did very successfully. Mirena was removed in March, and decided to start trying straight away given I was ancient (37), but were warned that it could take a very long time. I'm currently 9 months pregnant :-)

Littletabbyocelot · 01/01/2015 09:10

I was diagnosed with severe endo at 23 and know how scary Google is. I also joined a support forum which was full of worst cases so really freaked myself out.

What I wish I looked up was the endometriosis diet. I nearly was a worst case scenario and was offered a hysterectomy at 33 after a few years of ivf. I was also offered experimental ivf and at the same time saw a nutritionist who completely changed my diet. For me cutting out wheat and dairy made a massive difference. My last chance ivf worked and I now have 7 month old twins.

Happy girl, as a PP said please change your Gp. Period pain like you describe isn't ok.

APotNoodleandaTommy · 01/01/2015 09:29

I have/had? endo which was ablated in a laparoscopy, and I was pregnant 9 months later! I now have a gorgeous little boy exhausting me :)
I did feel a lot of anxiety to try to conceive earlier than I would have planned were it not for the diagnosis, but these things work themselves out, I feel
I seem to have the endo back worse, however, and am trying to see a specialist at present to work out what's going on.
But yes - a successful pregnancy here :)
Try not to worry, though I of all people know that's easier said than done

Anydrinkwilldo · 01/01/2015 09:54

I was diagnosed with endo at 21, told to start trying for children them as there would be a lot of work involved with getting me pregnant. At 28 I conceived straight away first month of trying. I'm now pregnant for 3rd time with my 2nd happy accident. There is always hope x

Smileybutstressed · 01/01/2015 11:52

My mum had endometriosis as do I. She has had myself and my brother. I have had 2 pregnancies - first one ended in a miscarriage at 7 weeks the second one resulted in a beautiful little girl who is 17 months old today :D. Don't feel so hopeless

FabulousFudge · 01/01/2015 12:41

Definitely look at changing your diet, as it's something pro-active you can do to potentially help to improve your condition.

I find some of the UK Facebook pages a great source of support too.

Betsy1925 · 01/01/2015 12:44

hopingforamiracle I'm 25 and had a laporoscopy last year. They found endo on one of my ovaries. And I was terrified I wouldn't be able to have children. 1 year on I have a gorgeous 10 month old baby boy (they advised me to try straight away so I could take medication) alot of women have it and they have children and don't even know they've got Endo until they have an op for something else. I have minimal endo with severe pain.

I found endometriosis-uk.org
Really useful at getting some understanding. It is scary but please try not to think of worst case scenario and I learnt my lesson that Google can be dangerous! There is alot of support out there. I'm here if you need a chat x

BerylThePeril44 · 01/01/2015 13:02

It depends how extensive it is and how much damage it does. I had one birth child without any problems in mid twenties, but by early thirties it became so extensive, (stage4)that it caused reproductive organs to be 'stuck' and I was unable to conceive again. I now have a second child, through Adoption, and have had the 'whole lot' removed with a hysterectomy...happy days! My sympathies...its a miserable condition which gets worse as you get older.

casperandjasper · 01/01/2015 13:46

Hi Op, so sorry to hear you are going through this.

I have endo (diagnosed 28 years ago) and had a chocolate cyst surgically removed followed by a year of steroid treatment - which stopped my periods and allowed any remaining endo time to clear.
I went on to have 2 children 8 years apart (our choice) without problems (and without further treatment for the endo).

My endo was symptomless (GP discovered the cyst during a routine smear) and I wonder how many women who conceive and have children without difficulty also have endo but just don't know it.
What I'm trying to say (badly) is that an endo diagnosis does not necessarily mean difficulty conceiving.

Best of luck to you.

saturnvista · 01/01/2015 14:07

It does not necessarily get worse as you get older. How unhelpful and inaccurate.

CallMeExhausted · 01/01/2015 14:17

When you google, you are not going to find stories of women whose endometriosis didn't cause them problems.

I have "moderate to severe" endometriosis as confirmed by CT scan and laparoscopy. It was an incidental finding initially, the CT scan was for something else. Both of my children were "surprises" so fertility has never been a big issue. I do have heavy periods, but they are not particularly uncomfortable.

laurz75 · 01/01/2015 14:36

I have endo and two children. My first took nearly two years to concieve - a laparoscopy and flush of tubes diagnosed endo - the following month I was pregnant. My dd was concieved on the first month of trying!! Being pregnant sorted out my endo massively too and I get very few symptoms now. Please don't worry and stop googling!

Aubrianna · 01/01/2015 14:44

I have this and have had 5 children in 7 years with no problems at all! - in fact it was a relief to be pregnant because it was an end to pain for 9 months!

5Foot5 · 01/01/2015 17:25

I was diagnosed with this while undergoing investigations for infertility. I had medication and surgery but did eventually conceive through IVF.

stopgap · 01/01/2015 17:39

I have adenomyosis, PCOS and Hashimoto's, and got pregnant twice (naturally), both times within a month or two. I do follow a Paleo diet, take Vitex etc. and am sure these things helped. Good luck.

rookietherednosedreindeer · 01/01/2015 18:24

I had some pain in my 20's so was put on non stop pill. When I came off it at the age ofr 34, I got pregnant within 2 cycles. It was only when we started ttc no2 that I had real problems and was diagnosed with stage 4 endo. Unfortunately despite two bouts of surgery we didn't manage to have another, that was also down to my choice to stop trying because of my age, and my concern that the Endo would get worse and I'd need to have more surgery. Since then I have been on the pill and pain free (touch wood) for crikey five years now, and menopause is in sight, woo hoo !

Apparently taking the pill (Cerazette is good for Endo sufferers) without a break is good for stopping the Endo from getting worst and my consultant said that if you are on it long term then when you come off you get a bit of a short term fertility boost, which is probably why we got pregnant so quickly with DS.

I would try not to worry too much about it at this stage, the Endo website is scary and I found some of the threads too much to look at.

Northlondonma · 01/01/2015 19:41

Hi there. First things first people only really write horror stories on the internet. I have endo and have two lovely children. I had to have a laser laporoscopy before conceiving both times to clear away the endo which gives you a better chance of conceiving. X

Original poster

hopingforamiracle · 01/01/2015 20:12

Thank you all so much, you have given me hope :)

Like some previous posters mentioned, I thought that the negative stories were perhaps inaccurate due to women who don't have difficulty conceiving not posting or telling their stories.

I just hope that I'm one of the lucky ones that gets pregnant easily :)

OP posts:

LittleMachine · 01/01/2015 20:29

I have advanced endo (and pcos), and was told I would never conceive naturally, so I didn't use contraception with new DP. I was pregnant within about 6 months. We TTC for DC2 and only took about 4 or 5 cycles to conceive him.
I never had any treatment as I didn't want further surgery, and the hormonal treatments sounded awful to me. Don't lose hope!

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