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Conception

When's the best time to get pregnant? Use our interactive ovulation calculator to work out when you're most fertile and most likely to conceive.

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Original poster

TTC with Endometriosis...

18 replies

EndoTheRoad · 07/09/2010 12:00

Hi, all.

I've been (actively) ttc (2nd child) for over a year. I have one son, almost 12.

Saw gynae in august, had scan which showed a 4.5cm ovarian cyst and 2cm fibroid in uterus.

I had blood tests which showed a raised CA 125 and prolactin level. Repeat tests a couple weeks later showed a normal CA 125, but an even-higher prolatin level. Gynae thinks this may be a reason I'm not yet prego and his thoughts are leaning towards Endometriosis.

So, he's referred me to and endocrinologist - appt 11th oct. In the meantime, he's requested I have an HSG - only, my CD1's hard to judge as I get intermittent bleeding.

Dreading the procedure - almost passed out during scan thingy - seeing it on the screen. And, obviously worried about what they'll discover (severe aches/pains in whole pelvic region past 9 months), still, I know it has to be done.

I guess I'm simply hoping to hear from/talk with you gals in a similar position

Much thanks in anticipation.

OP posts:

AttilaTheMeerkat · 07/09/2010 14:04

A raised prolactin level will most certainly interfere with ovulation.

Has surgery not been at all suggested to date?. Endo is usually only diagnosed through a keyhole surgery op called a laparoscopy.

What's his opinion as well on the intermittant bleeding, the fibroid and the cyst (what type of cyst is it as there are several).

A HSG will not detect endo deposits if they are indeed there as they are very small (have endometriosis myself and have had a HSG as well).

I would actually look into getting a second opinion from a gynae with a specialist interest in endometriosis - it is fair to say that some gynaes are far better than others when it comes to dealing with such issues.

piprabbit · 07/09/2010 14:19

I'm sorry to hear that you are struggling to get pregnant and are now having to deal with a possible endo diagnosis. My story is a little extreme, but I hope it will show you that although you may feel like you are at a low point at the moment it may herald that start of more positive things.

My endo was diagnosed when I had a laparoscopy for an ectopic pg (loads of endo scarring found, plus right tube removed). This was at the start of the September.
I had another laparoscopy to tidy up endo tissue and check viability of left tube at the end of November. The tube was buggered.
DH and I had a tough few months talking about what our next step was and decided to go for IVF. Had the first round of treatment in the following August and had my DS in May after that, just a little over 18 months after the diagnosis.

With hindsight, getting a diagnosis and understanding the extent of problems was the best thing that could have happened. We had been trying for DC2 for 2 years and would have probably just trundled along if I hadn't had that ectopic.

I truly hope that getting the treatment you need will be the start you need to be able to get pregnant. Good Luck.

Original poster

EndoTheRoad · 07/09/2010 15:46

Thank you, both, for your reply.

AttilaTheMeerkat, the gynae wants to wait and scan cyst again next month - 2 months after discovering it on the scan. He said he cannot confirm what type of cyst it is, but if it's still the same size or grown then he'll request a laparoscopy for removal - which'll also treat any endometriosis.

He doesn't seem too concerned about the fibroid, but tells me this could be the cause of the intermittent bleeding.

How are you managing your endo?

piprabbit, thank you for sharing. I'm so pleased your story had a happy ending!

OP posts:

AttilaTheMeerkat · 07/09/2010 16:45

Nowadays I manage it through taking the pill but I have previously had a laparoscopy type op to remove it. It can come back though and mine has though not as bad as before surgery.

I also became pg two months post surgery.

Good luck to you.

Original poster

EndoTheRoad · 09/09/2010 11:34

AtillaTheMeerkat, what was/is the severity of your endo?

I'm assuming the pill eases the symptoms of endo... how long have you/will you continue to take it?

OP posts:

AttilaTheMeerkat · 09/09/2010 13:16

I can take it for a couple more years then the GP will find something else for me (without estrogen in it).

I had a "mild" (hah!) form of this disease; stage 1/2. It was mainly sited the top of my uterus.

Eclairwaldorf · 23/11/2011 09:06

bumping this thread, just wondering if anyone is currently ttc with endo, or ttc with one ovary?

LavenderLilac · 23/11/2011 10:26

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Mersea · 23/11/2011 18:41

I am trying to ttc with only one ovary, as I had one removed seven years ago as a result of endo. I then fell pregnant four years ago but had mmc at 12 weeks I only started trying again back in Jan but have had no luck. I am not sure I am ovulating anymore from the remaining ovary and hoping that the endo has not affected that one too. I remember from the first one that I did not have too many symptoms (no bleeding between periods etc) until very late when I suffered really bad pain during sex and at the time of my periods, unfortunately it was only diagnosed late and had to have the whole ovary removed. I am not too sure where to go from here, if I have damage to remaining eggs then IVF is not even an option.

Eclairwaldorf · 23/11/2011 18:46

I have just had my right ovary removed as it was nastily stuck to my bowel.. Have endo and ds is 18 months and we are going to start number 2 after Xmas, any tips?! We used pre/seed last time and I did ovulation charting too, took us 6 months to get pregnant so we were lucky but I also used clearer fertility monitor from day 1 [very impatient emoticon].

Eclairwaldorf · 23/11/2011 18:48

*start ttc number 2, fat fingers syndrome on iPhone

Eclairwaldorf · 23/11/2011 19:20

Mersea are you still under a consultant or could you get another referral?

Mersea · 23/11/2011 23:09

Just been referred by the doctor again last week but waiting for appointment, with the waiting list it probably will not be until the new year. I am 40 in March so unlikely to get IVF on the NHS unless I get seen before then. I am not feeling very strong at the moment and wonder if going through all the tests and disappointment each month is worth it, especially at my age I never planned on being an older mum. My relationship with dp has been really strained lately with all that is going on and I would hate for things to get worse I am not sure it would take the pressure.

flutter6y · 23/11/2011 23:44

Hello

I'm in a similar situation, i have just learnt.

We've been ttc for first time for 10 months now (well 7 months when we've made a decent effort iyswim) and went to the GP last month as i'm 38 and getting worried I'm going to miss the boat. We were immediately referred on and went to ACU for first time this Monday. We were told that i have low progesterone and scan revealed that I have an endometrioma. Got to have more blood tests (CD 1-3) and go back to see consultant. My chap also has issues it seems, sperm count being low, motility good. Retest of a different kind, recommended.

not sure what to make of it all. Been googling frantically but guess i need more info on my own body. Not had any obvious symptoms, but I gather that having an endometrioma would mean its likely I have endometriosis as well, or at least in other places too. (i'm confused - does endometrioma mean i have endometriosis? i think it does but maybe not always?). I'm realising that the ovulation pain i get might have been a sign of the endo and maybe some of what i believed was ibs is actually endo related? i don't know. if i've understood correctly an endometrioma can seriosly affect ovulation from that ovary. My other the scan suggested was ok. i think.

I had some awful symptoms of excruciating pain just before period for several months a few years ago, shortly after I started a break from the pill and my GP had suggested endo back then, but further investigations led to a diagnosis of IBS and never endo. Now i'm looking back and thinking i've probably had endo for years.

sorry I'm going on. Keen to learn more here and any advice gratefully received. and keen to be of any support I can. I'm a newby here but read lots of thread over recent months. This is such a good place when you can't really talk about this stuff with many others. I'm finding it hard not to talk to my mum but have realised in recent years that she worries so much it really isn't possible to share with her. times like this week i wish I could though

all the best to you

flutter6y · 23/11/2011 23:51

Mersea - i'm sorry you're having a tough time. I wish i could help you feel a little stronger. I'm new to all this stuff though and don't know what to say. I hope your appt comes round soon and there is something they can offer you to help. In the meantime we're here (well i am, can't speak for anyone else lol) and if you want to talk, yell, cry, exchange tips etc etc, I'll check in on this thread soon :)

AttilaTheMeerkat · 24/11/2011 09:17

Hi flutter6y,

re your comment:-

"I had some awful symptoms of excruciating pain just before period for several months a few years ago, shortly after I started a break from the pill and my GP had suggested endo back then, but further investigations led to a diagnosis of IBS and never endo. Now i'm looking back and thinking i've probably had endo for years"

I think your suspicion is more likely than not correct. It can take on average around 7 years for a women to be diagnosed with endo. Some women too who are diagnosed with IBS actually have endometriosis, I have heard that so many times.

An endometrioma can indeed be associated with endometriosis; its also called a "chocolate cyst" (because it contains old brown blood).

Endometriosis needs careful management by a gynae; you need a cons gynae with vast experience in treating such cases. Communication too between the three of you is also vitally important.

www.endo.org.uk is a good website for both you and Mersea to look at.

Mersea · 24/11/2011 21:15

Thank you Meerkat for your link to the organisation. I also had a diagnosis of IBS and constipation before mine was found. It was only by chance that we had a locum at the time who was not happy with the previous doctor's diagnosis and sent me for a scan. Found my ovary to be the size of a grapefruit! Thank you for your kind words flutter6y it is good to know that you are not alone in these sort of things.

flutter6y · 28/11/2011 21:43

thanks Meerkat (and great name, we are meerkat fans in our household - OH appears to be collecting them!) Very useful website. thanks. I had stumbled upon the endo website but recommendations are always good, and I have already learnt loads from the forum on there.

And yes, the more I read, I think I've had endometriosis for ages, but without bad symptoms, fortunately. Its only now it appears to potentially be a problem. I am so impatiently awaiting my next appt at ACU now, (16 days away) as I jsut want more information and to know what we can do about it if anything. This ttc lark is a testing time and I know I've not had so long to wait compared to many on this forum. All the best folks!

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