Girls with Endo............. :-) :-) :-) :-)

[floofymad]

Hi girls long time no talk ! I have a 6 month old beautiful boy called Daniel James ! Who is my world !!! I see we also have a few more preggys in here !!! I have been so busy since DJ came into my life I literally haven't got a minute ! DJ was born profoundly deaf . He has the cutest blue hearing aids and is being tested for cochlear implants in June and if he's suitable will be operated on dec ! He's amazing my little miracle ! And in June we start ttc our little miracle no 2 ! Im on Facebook if anyone wants to add me- Gemma ohagan with apic of me witha gorgeous 6 month old ! Live to
U all ! I miss u all terribly - especially you floofymad! Xx

Hello Gem! How wonderful to hear from you and all about your little boy.
Like Petitpas, hopefully he will get the implants and everything will go smoothly for you. I'm currently 35 weeks with our first (which I thought would never happen lol) and starting to get nervous about the birth.
Petitpas - so happy for you Glad they finally found the right treatment and everything is going well. We're expecting a little girl...

 

[Lisa40]

Hi Girls

I'm wondering if I can joint this thread for a little support. To give you a little background I was on BC for 14 years from 16-30 & then we decided to try for a baby, 2 years later & nothing had happened so we went to the docs, they found a cyst on my ovary & booked my in to have it removed. In the meantime they found that my OH has motility issues with his & thought that our issues were down to that.

I have had very light very regular periods, both on the pill and off, 2-3 days max & no pain at all (I'm so sorry for some of you ladies who suffer terribly, my friend in work suffers with the pain & it's awful) so we presumed I was all ok apart from the cyst. Anyway I had the operation on 5th Jan this year & all went well.

I had my follow up appt today with the surgeon who did my laparoscapy in January & I was soooo looking forward to telling him that he'd worked a miracle & we were pg... but, before I had chance he basically said that when he was operating to remove the cyst he had found that I had severe endometriosis, so bad that it had stuck my ovaries to my pelvic wall & that although they had initially thought it was my OH issues causing our problem, that he thought even without that I would have real trouble conceiving naturally...

At that point I said... but I'm 8 weeks today but he just looked shocked & kept saying "but I don't think that's possible" I had to get my scan out to show him.

He was really pleased for us in the end but had to get another consultant in to check that they had the right patient as he said it was less than a 0.5% chance that this could happen given both of our problems!!

However, after leaving the office and going back to work, I told my workmates what had happened & they asked if it would cause any problems with the pregnancy, I hadn't even asked that & now I'm googling & it seems to just be a minefield of different information

Basically it looks at though there is an increased chance of miscarriage, high blood pressure, pre eclampsia and pre term birth, which is now scaring the life out of me. It's just very weird as I have had very light, very regular periods and no period pain ever, whereas a friend of mine in work has endo & has really bad problems every month!

Ah well nothing I can do about it now, what will be will be, I just pray my little flump hangs on & seeing your stories on this thread has given me hope that all may be ok

Wish me luck girls & to all of you

xx

 

[floofymad]

Hi Girls

I'm wondering if I can joint this thread for a little support. To give you a little background I was on BC for 14 years from 16-30 & then we decided to try for a baby, 2 years later & nothing had happened so we went to the docs, they found a cyst on my ovary & booked my in to have it removed. In the meantime they found that my OH has motility issues with his & thought that our issues were down to that.

I have had very light very regular periods, both on the pill and off, 2-3 days max & no pain at all (I'm so sorry for some of you ladies who suffer terribly, my friend in work suffers with the pain & it's awful) so we presumed I was all ok apart from the cyst. Anyway I had the operation on 5th Jan this year & all went well.

I had my follow up appt today with the surgeon who did my laparoscapy in January & I was soooo looking forward to telling him that he'd worked a miracle & we were pg... but, before I had chance he basically said that when he was operating to remove the cyst he had found that I had severe endometriosis, so bad that it had stuck my ovaries to my pelvic wall & that although they had initially thought it was my OH issues causing our problem, that he thought even without that I would have real trouble conceiving naturally...

At that point I said... but I'm 8 weeks today but he just looked shocked & kept saying "but I don't think that's possible" I had to get my scan out to show him.

He was really pleased for us in the end but had to get another consultant in to check that they had the right patient as he said it was less than a 0.5% chance that this could happen given both of our problems!!

However, after leaving the office and going back to work, I told my workmates what had happened & they asked if it would cause any problems with the pregnancy, I hadn't even asked that & now I'm googling & it seems to just be a minefield of different information

Basically it looks at though there is an increased chance of miscarriage, high blood pressure, pre eclampsia and pre term birth, which is now scaring the life out of me. It's just very weird as I have had very light, very regular periods and no period pain ever, whereas a friend of mine in work has endo & has really bad problems every month!

Ah well nothing I can do about it now, what will be will be, I just pray my little flump hangs on & seeing your stories on this thread has given me hope that all may be ok

Wish me luck girls & to all of you

xx

Hey Lisa,
Firstly, congratulations! My story is pretty similar really, although I was diagnosed with Stage 3 endo. My periods were pathetic and I used to get pain before it arrived etc but none during and periods weren't heavy at all.
If you google, you will find those things giving us increased risk of miscarriage etc, but there's also a very likely chance you won't have those things! In face pregnancy helps endo, so your body is doing the right thing! I've been fine, and apart from the first 12 weeks, whenI did get cramping and pain, have had no endo worries. My BP is fine, no pre eclampsia etc. Just look after yourself and stay off Google! lol. Take care x

 

[Lisa40]

Haha thanks Floofy & I know what you mean...google is evil lol!

I guess I was just in a bit of shock and was trying to find out as much as I could, but I guess they don't print the stories where everything is fine. I just have to keep telling myself that it's more likely to go right than wrong.

Good luck on your birth, that bit is terrifying me too haha!

xx

 

[hope n pray]

That's fab news petit! Hope your next scan goes well. My last surgery was April. Had lap with excision and hysteroscopy. They've stuck me back on clomid for 3 more months now x

Hi Floofy

I am reading your posts now as I am sure you are getting close to your delivery date, I was just interested in your history of endo and your journey to conception.....
Maybe you or anyone else in the same situation as me can give me some insight on this. I just finished my first round of clomid 100 mg CD5-9 and o'ed on cd 16 or 17 I guess.....but HPT this morning (CD28 today) came out negative so AF will show her face soon I guess.

I was diagnosed with endo 3 years ago by a lap surgery and since then it has been pretty manageable except for bad period pain on day 1. But I have recently done a lot of reading on immunological disorders in women with endo which actually effect the fertilisation or implantation of embryo and the women dont even know that they have had a mini miscarriage as their cycle comes on. So I am thinking why is my RE putting me on Clomid to help me ovulate (which I have been doing on my own as far I know as my regular cycles and other signs of O) instead of checking me out for antibodies or other immune system problems that may be preventing the egg from fertilization or implantation.
I have also heard that pregnancy helps endo so for those women who have gotten to the stage of implantation, I am sure they dont have to worry about this. What I am talking about is the earliest stage of cycle where the embryo is not accepted by the body due to immune issues.

Anyone else heard of this? I told my RE's office today that I dont want to go on another round of clomid until I get the tests done so I am gonna wait out this cycle naturally TTC and get some answers.

 

[hope n pray]

Hey I meant to add A BIG congrats to you and all the other brave endo sufferers who have succeeded in getting their lil' miracles!!! As for the rest of us, I am sure we are close to getting there...so hang on.

 

[petitpas]

Lisa, I also had light periods. It never bothered me in the slightest to even go swimming on cd1 for instance (with a tampon, of course!).

I also had one of my ovaries stuck to my pelvic wall and my bladder. It was 'unstuck' during my first laparoscopy. Since then I have ovulated and fallen pregnant more than once from that side.

If you are worried about pre-eclampsia, high BP and other placenta issues what I would suggest is taking a baby aspirin once a day. Check this with your doc, though, and obviously only take it if you are not bleeding and don't have a stomach ulcer or similar. Aspirin is now commonly used to prevent or at least delay pre-eclampsia.

Otherwise, congratulations on your pregnancy! That's amazing that you beat the odds I hope that everything is plain sailing from now on!

Hope n pray, I am aware of the immune issues you write about. Unfortunately, it would seem that they are the reason I suffered so many miscarriages. It is not common but it has been said (I haven't found any statistics to support this, btw) that women with endometriosis are more likely to have an overactive immune system.
I was tested for natural killer cells and the result indicated that mine were unnaturally aggressive. The science behind all this is still a bit sketchy but there is an on-going NHS trial trying to see whether the proposed treatment works.
It worked for me and I was surprised at how simple it was: I took steroids for the first three months of pregnancy.

If your RE doesn't agree to the tests, you could still discuss the possibility of steroid treatment without testing. A number of fertility clinics now offer the treatment as standard to women who have trouble conceiving for exactly the theory you mentioned: embryos are attacked before they can implant properly, as if you were suffering recurrent miscarriages but never make it to bfp stage.

At the same time, I do believe it is quite common to need more than one Clomid cycle to fall pregnant. Maybe the body needs to get used to the extra boost?

It is also worth checking whether you are really ovulating. Did you have any scans to this effect? I think it is called a monitored cycle where you take Clomid and have regular scans. They show how many follicles you produced and whether they ovulated or not. Well, that's what I understood the process to be. I've never been down that route myself.

Good luck with everything and please do let us know how you get on Xxx

 

[hope n pray]

Hope n pray, I am aware of the immune issues you write about. Unfortunately, it would seem that they are the reason I suffered so many miscarriages. It is not common but it has been said (I haven't found any statistics to support this, btw) that women with endometriosis are more likely to have an overactive immune system.
I was tested for natural killer cells and the result indicated that mine were unnaturally aggressive. The science behind all this is still a bit sketchy but there is an on-going NHS trial trying to see whether the proposed treatment works.
It worked for me and I was surprised at how simple it was: I took steroids for the first three months of pregnancy.

If your RE doesn't agree to the tests, you could still discuss the possibility of steroid treatment without testing. A number of fertility clinics now offer the treatment as standard to women who have trouble conceiving for exactly the theory you mentioned: embryos are attacked before they can implant properly, as if you were suffering recurrent miscarriages but never make it to bfp stage.

At the same time, I do believe it is quite common to need more than one Clomid cycle to fall pregnant. Maybe the body needs to get used to the extra boost?

It is also worth checking whether you are really ovulating. Did you have any scans to this effect? I think it is called a monitored cycle where you take Clomid and have regular scans. They show how many follicles you produced and whether they ovulated or not. Well, that's what I understood the process to be. I've never been down that route myself.

Good luck with everything and please do let us know how you get on Xxx

Thanks so much for your detailed response and sharing your experience, petitpas. I have scheduled an appt with RE in 10 days time to discuss these issues and decide how to go from there. I am very interested to know how your testing for NK cells was done? Is it a normal blood test or a biopsy kind of test? And when you conceived, was it a medicated cycle right from the start or the steroids were given after a positive BFP??

My clomid cycle was closely monitored by my RE and she found one dominant follicle which was triggered by means of an HCG shot on CD15. I have also been charting BBT and did OPK testing regularly this month and BD'ed like there was no tomorrow. Even prior to Clomid, I have had positive OPKs before and regular Ov pains on CD 15 so I know that maybe I was ovulating all this while although I never charted my temps before. This makes me kind of scared coz I never got even one BFP in my entire life and I have been having unprotected sex for quite some time even if we were not actively trying. I am really sorry to hear about your m/c, I know how painful they can be. But sometimes I think that with a m/c you atleast know that conception occured but did not stick but I did not get even one missed period or a single BFP ever, what could be so wrong???

I have found a lot of resource online for immune related IF issues for endo patients and I am going to post that on these forums in a new thread. Hopefully someone like me will stumble across it and take a step in the right direction instead of and wasting thousands on IUI.

I will report back after my RE appointment. Take care

 

[floofymad]

Hope n Pray - I've heard a lot about the immune issues too, but not many places do the testing. I also think it would be worthwhile persevering with clomid. The reason they give you it, is to strengthen your ovulation. I ovulated on my own, but my levels were around 20-30 which is not really enough to sustain a strong pregnancy. After 3 cycles on 50mg and 2 cycles on 100mg, my progesterone level was 130 I think! The Gyno said anything towards or above 100 usually means a pregnancy. Make sure they're doing your levels around 7 days after you ovulate.

Hi to everyone else! x

 

[fifi-folle]

Hi ladies, hope you don't mind me popping in, just want to give you some hope. It took us 18 months and 4 m/cs to conceive ds (aspirin was only thing we did differently), endo improved massively when preg and after (breastfeeding kept af away for 4 months), and surprisingly I find myself pregnant again (after assuming we'd be ok it had been so hard to conceive C). I know, we got greedy

My endo was undiagnosed for 8 yrs and had widespread deposits, adhesions and tethered ovary, didn't respond to zoladex and grew back within 6 months of lap, but pregnancy and bf'ing has really helped!

Hope your pregnancies are going well and sticky baby dust to all ttc'ing!

 

[petitpas]

Congratulations, fifi! That's amazing news!


Hope, I really couldn't say what is worse: never falling pregnant or falling pregnant again and again and then miscarrying. It's not a very nice competition and it is so horrible to suffer mostly in silence watching all your friends around you go ahead and have babies when you just can't.
You seem to be doing all the right things with your RE. You are following all the standard steps starting with Clomid, then maybe IUI... There is a reason they have so many steps and that is because mostly it works!

I have been extremely lucky because I have been able to fall pregnant very quickly each time we tried. Not something my endo specialist expected at all. So I was not on a medicated cycle. My nkcells test was a blood test. From reading scientific papers I gather that a biopsy is more accurate but the test I had resulted in steroid treatment and that's all that mattered.
I took my steroids from ovulation. Some doctors prescribe it from bfp for recurrent miscarriers but that isn't your problem. So I would see whether your RE is willing to follow the same protocol as many IVF clinics who prescribe steroids from ovulation with IUI and IVF.
I am hoping you don't need the steroids as you are increasing your chances with Clomid already!

Oh, I can't remember whether you already take these (I'm on phone and too lazy to scroll back) but you could ask for progesterone supplements from ovulation (you need to track and only take from 2dpo or after as too early can impact on ovulation) and start taking a daily baby aspirin. I assume you are already on folic acid and prenatals.

Good luck with everything!

 

[hope n pray]

Thanks Floofy for the info on clomid n progesterone, I didn't know that. I am surprised my RE didn't test my progesterone levels on day 21. I was feeling v uneasy about this coz I read all the TTC girls talking about prog levels all the time,I should have gone out n got it tested myself in the last clomid cycle, would have got more answers now

I am surprised how the approach of most fertility clinics seems to be reactive rather than proactive! It's almost as if they want us to spend 10s of thousands even if we have to go through heartbreaks n m/c before they decide to tweak or introduce additional testing n factors. I may be wrong n this doesn't apply to every doctor and sometimes tweaking and trial is the only way to get success, but still makes me worried. Sorry about the rant.

Anyways, I found out that MI labs do this testing n they are based in Chicago. They sent me the entire test kit n I am supposed to get my blood drawn n FedEx it to them the same day, the test is called NK assay and it costs around $400. I am waiting to see what my RE says about this on 13th.

Fifi, thanks for the encouragement! It really makes me happy to hear about these success stories and gives a lot of hope. Sending your way The best of wishes and good luck to all of us.

 

[hope n pray]

Congratulations, fifi! That's amazing news!


Hope, I really couldn't say what is worse: never falling pregnant or falling pregnant again and again and then miscarrying. It's not a very nice competition and it is so horrible to suffer mostly in silence watching all your friends around you go ahead and have babies when you just can't.
You seem to be doing all the right things with your RE. You are following all the standard steps starting with Clomid, then maybe IUI... There is a reason they have so many steps and that is because mostly it works!

I have been extremely lucky because I have been able to fall pregnant very quickly each time we tried. Not something my endo specialist expected at all. So I was not on a medicated cycle. My nkcells test was a blood test. From reading scientific papers I gather that a biopsy is more accurate but the test I had resulted in steroid treatment and that's all that mattered.
I took my steroids from ovulation. Some doctors prescribe it from bfp for recurrent miscarriers but that isn't your problem. So I would see whether your RE is willing to follow the same protocol as many IVF clinics who prescribe steroids from ovulation with IUI and IVF.
I am hoping you don't need the steroids as you are increasing your chances with Clomid already!

Oh, I can't remember whether you already take these (I'm on phone and too lazy to scroll back) but you could ask for progesterone supplements from ovulation (you need to track and only take from 2dpo or after as too early can impact on ovulation) and start taking a daily baby aspirin. I assume you are already on folic acid and prenatals.

Good luck with everything!

Oh, just read your response and yea totally agree with you that it's the most awful comparison b/w repeated m/c n nev falling pregnant. I guess m/c is more devastating due to the toll it takes on your body as well. I don't know what I was thinking

Thanks for the info, will keep it in mind during my doctors visit. Take care....

 

[Goldfish]

Hi, I've just come across this thread and skimmed through a few posts - congratulations to all the ladies who have babies/BFPs! It's really cheered me up - I had a lap in June 2011 to remove two large endometriomas and have been waiting for AF to return (Zoladex treatment was "supposed" to be wear off last Sep...).

Good luck to the rest of you ladies TTC and I hope we can all have some good luck soon!

 

[gem1985x]

Hi Goldfish , Just seeing this post , Is the Zoladex taking a while to get out of your system ? Sending you lots of baby dust !

Hope all you other girls are ok ?! Have decided to start TTC for no 2 but trying to be a bit more relaxed about this this time , not taking soy - iso or temping , just opks and every second day . We thought we had a surprise BFP last month as I was late but AF appeared two hours afetr testing so we where really disappointed ! So decided to offically TTC for our 2013 baby bro or sis for DJ x

 

[Goldfish]

Hi Goldfish , Just seeing this post , Is the Zoladex taking a while to get out of your system ? Sending you lots of baby dust !

Hope all you other girls are ok ?! Have decided to start TTC for no 2 but trying to be a bit more relaxed about this this time , not taking soy - iso or temping , just opks and every second day . We thought we had a surprise BFP last month as I was late but AF appeared two hours afetr testing so we where really disappointed ! So decided to offically TTC for our 2013 baby bro or sis for DJ x

Thanks gem1985x, the Zoladex has finally worn off after 9 months (how ironic)!! Happy to report AF came back a few weeks ago (and hopefully not too many more AF or no more AF for a while now since we are officially TTC!). Baby dust to you too!

 

[gem1985x]

Just wondering if any endo girls still use this I'm now a mummy to dj - 3 in August and Katie 1 in sept ! Still
Battling endo and ntnp at the mo ! X

 

[USAFWife319]

I have it but honestly I didn't have issues getting pregnant like I thought I would. We got pregnant the first time and we weren't really trying.

 

[Goldfish]

I can't believe it was more than 2 years that I posted on here. It's been a nightmare for us. 4 rounds of IVF and still no luck - found out I have very low egg reserve and am a poor responder on IVF meds. I hate endometriosis!

 

[petitpas]

Oh Goldfish
Lots of sticky babydust to you and gem

I'm ok. Currently expecting baby number two (pregnancy number eight).

I've heard there is a diet for endometriosis sufferers. Has anyone here tried it?