Looking for fertility hope from others with Endometriosis/ovarian cysts

(34 Posts)
Poppet82 Mon 23-Dec-13 12:01:22

Hello

I'm new here and nervous. After 18 months of only stalking these sites for information, I'm hoping that posting might help find other ladies with success stories to give my husband and I some hope.

I am 31 years old (DH 30 yrs old with no sperm problems). We've been trying for nearly 18 months. I had been having 7-10 days of black/brown spotting before my periods which was causing me huge anxiety about my fertility. We had a chemical pregnancy on cycle four of trying - I started bleeding 4 days after BFP.

After 6 months I had the full day three and day 21 blood tests, which all came back great and confirmed ovulation etc.

After 12 months my GP referred me to a consultant gynaecologist to investigate the spotting. She recommended Laparoscopy and Hysteroscopy. I had this procedure 4 weeks ago. She found stage 3 endometriosis and a 5cm cyst on my left ovary. (A complete shock to me as I have none of the usual endo symptoms like pain and heavy periods)

The good news was that the hysteroscopy confirmed that my tubes are open and clear and that the inside of my uterus is perfect. She removed the endo and the cyst without taking any ovarian tissue with it. She was very optimistic about our chances for conceiving after the surgery. Her advice was to try naturally for another two years (!). We were horrified by this and the GP agreed so has said she will refer us to the fertility unit after three months of trying.

I tracked my cycle after the op, and was lucky enough to see a LH surge on the OPK at day 14. I got my period yesterday at day 28 sad Good news that it seems to be back into a pattern but I'm feeling a bit hopeless now as I was hoping to be one of those women you read about who got pregnant immediately after her lap. Silly, I know.

I was just wondering if anyone else has a similar story and who has gone on to conceive? It seems to be a long, hard road for many endo sufferers. Any encouragement desperately needed. I started acupuncture this week to. I'll try anything.

Thanks ladies.

Robbib Thu 09-Jan-14 16:17:54

Lauren,

Thanks, that's helpful. I want to increase chances of pregnancy. I don't have any indication that there are problems I with my egg reserves but have been trying to get pregnant for 2 years and no joy. I didn't know that private cycles come out of NHS funded cycles so that's really helpful, you don't know what you don't know! Thanks!

So sorry to hear that.

X

Lauren83 Thu 09-Jan-14 16:38:10

I had never heard of DHEA being used for anything but increasing egg quality, that's the only info I researched anyway

Did you have an FSH and AMH test done? Do you know the numbers? And have you had an ultrasound antral follicle count done?

If you knew egg quality was an issue u would be tempted to give DHEA a go, but not knowing if it is and having endo I would be keen to move onto the next step and not mess about with that

A lot of GPs think you have to be trying 1-2 years to get referred for ivf but most CCGs say if you have known issues (like endo) you can be referred after just 6 months to access assisted conception services

Lauren x

fishybits Thu 09-Jan-14 16:58:22

My story very similar to NorthLondonMum only in my case it was 4 ops and 9 months ttc. My chap is Mr Richardson who is at Chelsea & Westminster.

DD is almost 2.

Good luck.

Poppet82 Thu 09-Jan-14 17:23:40

Thank you all so much.

It sounds like many if you have ha more than one lap. I'm praying that I get pregnant soon to help keep the endo at bay and avoid more surgery.

Sounds like Clomid won't be on the list of treatments for me as I ovulate on my own. I've read that IUI is no longer offered for endo patients as there's no proof that it has better success rates than trying naturally for those with the disease. Tell me if I'm wrong there.

I'm at the 18 month mark now so I can only assume that when I am referred to the clinic they will probably repeat my bloods and DH's SA and recommend ivf as the only option?

I guess I never thought it would come to that. But need to give ourselves more time naturally I guess.

Nice to hear lots of success stories ladies smile

Robbib Sun 12-Jan-14 16:13:43

Lauren,

Sorry for the delay in replying. I have been advised to take it as my gynaecologist thinks I may end up having to have IVF if I don't fall pregnant in the next 6 months. He has said if I don't it will be because my egg quality is poor.

Thanks for the advice re the IVF cycles. We will bear that in mind if we get to that stage. I'm seeing the Dr about IVF so we will see what they say. Are you local?

I'm so sorry to hear that. Stick with it!

Best wishes,

Robbib Sun 12-Jan-14 16:21:16

Lauren,

Not sure what happened there.

I haven't had any of the tests you refer to done yet. Would you recommend getting these done privately or via GP on NHS? I'm wandering why my gynaecologist hasn't recommended these yet? I wander if it's because I've just had a laparoscopy and he has said if I'm going to fall pregnant naturally it will be in the next 6 months. I'm back to see him in 2 weeks time so will ask him then.

On the basis that I've been diagnosed as having endometriosis (grade 4) for the last 11 years, I've had 3 operative laparoscopys and am 38 year is there anything else you would recommend please?

Poppet82 Tue 22-Apr-14 14:55:36

Hello all

When I started this thread, I had spent 18 months desperately looking for hope in other people's forum posts. My husband assured me that the internet is full of sad stories because that's where people go to find support. He told me that there are thousands of women out there who don't come back to tell the good news, as they are busy getting on with life and being newly pregnant.

He made me promise to come back here and update you so that when someone else Googles 'endometriosis and fertility' they will see some positive outcomes.

So, just to update - I got pregnant 10 weeks after my laparoscopy. I'm now 14 weeks and all is well. I hope that since then there has been happy news for many more people on this board. I know it doesn't work out for everyone, and that every battle is different. But here I am after getting into a big dark hole and assuming that endo was the end.

I guess you never know what's round the corner for you.

x

jennifer86 Tue 22-Apr-14 17:44:36

Many congrats, Poppet.
Thanks so much for posting your update. I didn't see you post back in December but just read it today, and whilst reading it thought I could have written your first post! I had a lap and hysteroscopy last week, found stage 3 endometriosis (also didn't think I had problems with painful periods but looking back on it I probably do, it's just I think that it's normal!) Gynaecologist removed the endometriosis and also said tubes and uterus are normal. So I'm really encouraged by your post, and as I said, thanks for updating us smile thanks

Poppet82 Wed 23-Apr-14 10:03:57

You sound just like me. If your tubes and uterus are all clear, that's really good news. I had stage 3 endo as well, two sites, both removed and my cyst was a simple cyst and not an endometrioma. I had no symptoms from pain either, just odd spotting. Good luck, try not to have a melt down if/when you get your period in the first couple of months. My expectations were way too high. I've got everything crossed for you!

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