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.

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!

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 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

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?

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,

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

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.

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

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 Wed 08-Jan-14 13:05:39

Its a tough one isn't it, I found out I had really low egg reserve and taking the DHEA was a knee jerk reaction to that, I was taking it not to increase my chances of pregnancy but to try improve my egg quality before ivf I was having.

I know some ivf clinics actively encourage women to take it, but some are massively against it, I took it without telling my consultant and when he operated the second time my cyst had filled back up to 8cm which was unusual being on the chemical menopause was supposed to help stop it spreading, he told me to stop taking it immediately and I did. I read it can feed the hormones that encourage endo to spread, even if I knew this I would of still risked it to try help my eggs I think, I was desperate

In what way are you hoping it will help? Have you reason to think you have issues with your egg reserves/quality?

How many cycles of ivf does your CCG fund? I'm sure you already know but if you have a private cycle it comes out of your NHS funded cycles, so if you get 2 might be better to do NHS ones first them private after if you aren't lucky

We had ICSI in Sept and started our second ICSI in Dec but it got cancelled due to my blood levels going sky high, now have to go down the donor egg route xx

Robbib Wed 08-Jan-14 09:53:09

Lauren,

Thanks for this. It's really helpful. Before I start to take it I'd be really interested to know if you took DHEA and if so for how long? I've looked at the research and it's really mixed. My gynaecologist has a good reputation, I've been seeing him since 2002 and I think I can trust him. He recommended it for me with a view to reviewing continued usage if I fell pregnant and if at 3 months if I didn't. Do you think I'm mad?

Lauren83 Wed 08-Jan-14 07:27:48

Hi girls

Robbib I hope you don't mind me saying but there's a lot of info on line about DHEA making endo worse, just wanted to mention that for anyone reading, don't take my word for it but do your research first, my consultant is is head of the ivf and gynae unit at the hospital I had ivf and he gets a lot of women thinking its a miracle drug, I took it between laps and even though I was on Prostap for 3 months my endo spread like wildfire.

I had stage 4 everywhere including bladder, bowel, pouch of Douglas, ureters etc, had several cyst biggest at 15cm, I had an hour lap in May to diagnose then in July had a 6 hour surgery where they did excision on it all, had a bag for a while and my bowel reinforced and it was close to tearing they thinned it that much, had tubes roved too as had hydrosalpinx in it. He skinned the cyst from the inside so as not to damage any more ovarian tissue

Lauren x

Robbib Tue 07-Jan-14 16:22:32

Don't give up! I don't have good news but am really optimistic. I have grade four endometriosis and had my third laparoscopy in 13 years yesterday. My tubes and ovaries are in good condition and my gynaecologist moved extensive endometriosis. He has also recommended a natural supplement called DHEA and to take 25mg twice a day. He says it increases chances of pregnancy by 50% and significantly reduces the chance of miscarriage. You can buy it at DHEA.com. I ordered last night and it was $47 for 180 x 25mg. Take a look at this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3112409/?tool=pubmed#!po=33.871, it's a bit scientific but interesting. My gynaecologist who works out of Portland Street has suggested trying this for 3 months whilst looking for a good local IVF specialist and also seeing my GP with a view to paying for one privately, NHS for one, paying for another and a final NHS one and if then not pregnant it's not likely to happen. I'm also looking at my lifestyle as I have a very stressful job and need to make some big changes! Hope this helps. Good luck!

ifIsaynodontjustaskdad Tue 07-Jan-14 09:47:59

I have stage 4 endometriosis and was told at 25 I'd never have kids. I now have three, all without ivf so there is hope.

I have had three lots of laser ablation, two courses of dilated, two courses of acupuncture, twelve years of hormone therapy but actually what happened was after third lot of ablation I got married and because we thought there would be no kids we weren't trying and putting pressure on ourselves as we were planning to adopt Dd1 arrived 9 months after the wedding and I've been continuously pregnant or bf since. I won't lie, pregnancy with endometriosis is hard, I've had 4 miscarriages, but I have three babies. Good luck op, my advice is to not make it the center of your world, the stress may be part of the problem

Tinkertaylor1 Tue 07-Jan-14 09:41:01

Hello!
Endo sufferer here! I didn't have the usual pains but after explority surgery , was discovered to have endo, blacked tubes and a twisted ovary.

I went on to have an eptopic pregnancy sad

But I cud have full IVF and had dd lady year with three frozen embryos in storage.

Time is a factor , even though physically it's on your side at the moment, so I would push as hard as you can to be referred to fertility clinic

Good luck !!

AnandaTimeIn Tue 07-Jan-14 09:30:33

Oh, and I did end up being a SP but he is a gift.
22 now.

AnandaTimeIn Tue 07-Jan-14 09:29:05

Another success story here!

I had endo in my early twenties and it took a while (and a good consultant) to find it out, by laparascopy. I was first prescribed DepoProvera which I refused to take after reading horror stories about its side effects.

Can't remember what I did eventually take, but did it for 8 months and that also started me on an alternative healing quest. Did acupuncture, Bach Remedies etc. (Bach Remedies helps with the emotional fall out).
I think the combination did the trick.

They never told me which stage it was and didn't have an op.

At 36 I got pregnant within 3 months of having my coil removed. (I never used anything after the treatment and suddenly found myself pregnant at 28. It sounds contradictory to say I had an abortion but my life was in no way conducive to bringing a child into it then. I was stony broke and also the dad - even more broke! - was the type to have kids all over the place. He wouldn't have been there for me but I would've been tied to him for the rest of my life, being one of the "baby mothers" - ugh. I never regretted having that abortion. I am pro-choice anyway).

"Only one thing I don't really understand (and my GP doesn't know) - as my day 21 bloods show that I'm ovulating, will I be tried on Clomid first?"

Clomid should not be given unless there is definite proof that ovulation is not happening.

BTW black/brown blood like you described in your initial post can be a possible indicator of endometriosis being present.

lumpyprincess Fri 03-Jan-14 16:49:46

Hello, I was diagnosed with endometriosis after i had surgery to remove a lump from my lower tummy(which was a chocolate cyst) before hand i didn't know i had the condition. My now exhusband and i were trying for a baby but to no avail. He had a low sperm count. I went through a laproscopy and then started clomid to get me to ovulate again but it wasn't to be. My marriage failed due to many reasons but this being a big one. Im lucky enough to have found a special someone again and are being referred to the gynacologist to hopefully get us pregnant.
I just want you to know you're not alone and hopefully this will be our year!
Good luck

armsandtheman Sun 29-Dec-13 15:22:32

Sorry, I never had Clomid, but I live in South Wales and we had an endo specialist nurse who was happy to see you within a couple of weeks with an appointment. She was fab and assisted during the surgery so was able to give lots of reassurance and advice. If you have an expert in the area I bet the nurse who works with them might be able to do the same thing if you want advice on fertility treatments.

FWIW they only discussed IVF with me as I was ovulating, but I decided to adopt rather than do this after looking at the risks, so I got pregnant 'naturally' (apart from the op!)

Poppet82 Sat 28-Dec-13 21:05:25

Hello ladies

Wow, thank you all so much. I've never used a forum for this kind of thing and I didn't really think anyone would reply.

It's so comforting to hear that others have experienced this and have had success or are on the way.

I'm finding the waiting and emotional strain very difficult. Easier to distract myself over Christmas and not wanting that to end.

I'm going to wait two more cycles with acupuncture and then get that referral. Northlondonma - I'm from Oxfordshire and will be at the Oxford fertility unit if we need it so will hopefully have Tim Childs too!

Only one thing I don't really understand (and my GP doesn't know) - as my day 21 bloods show that I'm ovulating, will I be tried on Clomid first? Or will I be moved onto IUI or IVF? Or do they try Clomid to try and give you increased chances? I know I shouldn't think too far ahead but I'm interested to know the process as its all new to us.

Thanks again, SO much.

ThatWayMadnessLies Sat 28-Dec-13 19:30:46

I am 35 and have stage IV endo. Lost one tube because of a Fallopian abscess (most likely linked to endo). I also had a lap last Christmas and hoped that they would remove it all but it was so extensive that they couldn't remove it without sacrificing ovarian function or risking perforating my bowel. I wasn't given the chance to try naturally instead I went on monthly injections to stop my cycle until I got to the top of the ivf list. Two rounds of ivf later and I am 20 weeks pregnant and hoping for the best. The fact that your surgeon was able to remove it all is really good news and you need to give it a few months. Definitely get the referral from your GP though while you keep trying. Hopefully you won't need it but starting the process is a good idea - there is a lot of waiting about in this business!!

moldingsunbeams Wed 25-Dec-13 04:35:44

Hi there, I had Endo and very large cysts 19/20cm. I knew about the Endo but only found out about the cysts when I went for a scan for something else. Dd was conceived while those cysts were present and is now nearly 11. I had 8 operations for cyst and Endo removal so mine was quite bad.

Duckstar Wed 25-Dec-13 04:19:15

I was diagnosed with endometriosis earlier this year. Didn't have typical endo symptoms, but was getting increasingly bad sciatica mid cycle and also during period. Also was struggling to conceive DC2 (6 months of trying one chemical pregnancy. DC1 conceived first cycle)

Had laproscopy earlier this year. More because all other tests (ultrasounds, blood) all normal so surgeon couldng understand what was causing pain. Found extensive endo. All removed.

I was told by surgeon to try for 6 months to conceive. He was also positive that should conceive. If no luck then would go down fertility treatment.. Conceived 3rd cycle and am now 20 weeks pregnant.

I also read lots of stories on Internet about people who became pregnant immediately after lap and was so upset when AF turned up twice. I was focused on basically getting to 6 month stage so could go back and get treatment. 3rd cycle I started getting sciatic/period pains 3 days before AF. I was so upset as I thought my endo had come back rapidly. Booked a GP appointment to get referral back to gynaecologist and thought I better do a pregnancy test ( more so I could say definitely not pregnant must be endo) and was shocked to get a BFP.

Best of luck for 2014 and a BFP in the New Year! Try not to get too disheartened. You have been through a big procedure and the body needs time to heal.

I had an ovarian cyst on my right ovary. 10cm across. GP diagnosed me with sciatica. Eventually they realised what it was and I had an oophorectomy. I've since had 2 beautiful children, aged 5 and 2. Tubes open and good womb sounds positive. Hang in there x

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