Asymptomatic endometriosis?

(126 Posts)
EricaJ Sat 05-Apr-14 10:40:18

Hi ladies,

I was wondering if any of you have any experience on asymptomatic endo?

Long story short: been ttc for 2.5 years, had an mc at the very beginning (only took 2 months to get pg), then another mc 11 months later and nothing since. Got the tests done and everything came back normal, apart from my slightly short luteal phase, which is being treated with progesterone.

Been on clomid with hcg shot for 3 months and had two failed IUI cycles.

My gyno has suggested laparoscopy to discard (or confirm,and if possible treat) endometriosis. I don't have any of the usual symptoms but apparently 20% to 30% of the cases are asymptomatic.

The laparoscopy is on Tuesday so I'm trying to prepare myself for different outcomes.

If anyone has been through similar and would tell me about their experience, that would be amazing.

Thank you!!

naty1 Sat 05-Apr-14 21:13:41

Did they test thyroid as that can be a cause of low progesterone/ short Lp. And miscarriage.
My ivf wanted tsh under 2.5.
What time of yr were pg/ miscarriages?
Also thyroid can go after pg postpartum thyroiditus so i guess could be caused by the first miscarriage.
Would endo cause miscarriage?

EricaJ Sun 06-Apr-14 06:27:49

Hi Naty1

Thanks for your response!

I haven't got my thyroid tested but I am going to definitely ask for a blood test when I see my gyno tomorrow.

It's funny you ask what time of the year I mc... both times I got pregnant in October and first mc was in December, second one in November.

Apparently you have a higher chance of mc if you have endo too...

evilgiraffe Tue 08-Apr-14 22:07:01

I'm not sure about asymptomatic as such, but we were TTC for a long time. At 2 years 5 months of TTC we were diagnosed as "unexplained infertility" (blood tests, HSG, ultrasounds were all normal) and told to keep on trying naturally, and get referred for IVF if nothing had happened by the time we'd TTC for 3 years. At 2 years 7 months I had sudden unexplained crippling abdominal pain - A&E had no idea, gave me codeine and sent me home - the pain never reoccurred.

At 2 years 8 months or so, my periods went haywire - each one lasting about a fortnight - though my cycles were still regular as clockwork, no period pain worth writing home about etc. When I'd had three periods like that, I saw the GP and got a referral for an ultrasound which looked like I might have a blocked Fallopian tube, so was referred to a gynae for a laparoscopy. We got referred for IVF at the same time, as we were now at the magic "3 years TTC" point...

At 3 years 5 months I had a laparoscopy which resulted in the removal of one fallopian tube (it WAS blocked), as well as the removal of lots of endometriosis and a brand-new diagnosis of severe endometriosis. It was quite a weird experience, as we knew something must be wrong with one/both of us of we'd have conceived, but for the best part of three and a half years we were told there was nothing apparently wrong.

The consultant told me to go on the zoladex implant immediately for three months - this is basically the same function as downregulating in IVF, so turns off your reproductive system completely, aping menopause. After three months of that we went straight into IVF (now 3 years 9 months of TTC), and to our absolute astonishment the first cycle worked. I'm now 29 weeks pregnant and am so, so grateful to our consultant surgeon and the two IVF clinics involved with getting us this far.

Sorry for the essay! I really hope your laparoscopy gives you some answers, and that you are as lucky as we have been smile

EricaJ Wed 09-Apr-14 06:40:01

Hi Evil

Love the name by the way!

Thanks so much for sharing your experience. Well, guess what. I had my laparoscopy yesterday and they did find endometriosis on my right ovary (they have been scanning me before ovulation for 5 months now and the dominant follies always seem to be on the right so that's bad luck I guess).

They were able to remove it all there and then by laser. I am hoping that this was the reason for our mysterious 'unexplained' infertility and that we can conceive in the next few months, either naturally or with IUI (can't afford IVF right now)

At least I won't have to hear the super annoying 'it will happen once you relax' anymore. Well, no, it wasn't about relaxing, I needed surgery!

Thanks and congrats on your pregnancy, how exciting and well deserved! smile

Hope you feel better soon after the lap op. I am glad you got answers.
Endo is not normally picked up on scans anyway, it is usually only diagnosed through a lap op.

"Unexplained" is actually no diagnosis at all; all it means is that they have failed to find out what is wrong. Often it is a "diagnosis" given to couples when they have not been adequately investigated previously. People who think they've had "all the tests done" often have not. Some tests can and do get missed off.

evilgiraffe Wed 09-Apr-14 09:02:46

Hopefully the endo removal will help! Do you have any chance of NHS funding for IVF? It's worth asking your consultant about preparation for IUI if you go that way too - I'm not sure if downregging beforehand would be useful, but could be worth asking. Fingers crossed it's all easier from here, anyway smile

I couldn't agree more, Attila, "unexplained" was massively unhelpful for us and just meant people kept saying "there's nothing wrong with you so it could happen". It was quite obvious that there was something wrong, or we'd have managed to conceive! What's the statistic, something like 95% of healthy couples conceive within a year? Well, after 2.5 years and nothing to show for it it really does seem to indicate that you're not actually as healthy as appearances would suggest...

EricaJ Wed 09-Apr-14 09:16:45

Hello,

Unfortunately I am not longer based in the UK and there is no social security in this country so we would have to pay for IVF. I guess if they tell us it's our only chance to conceive, we'll have to find a way to afford it but hoping we are not there quite yet.

Attila Couldn't agree more! I was so sick of hearing that 'it will happen when it's meant to happen' and similar BS. If a 'healthy' couple (according to the tests they run) are having sex at ovulation time every month for 2 years and nothing happens, there is obviously something going on... If someone else says 'stop thinking about it and it will happen', I will scream!

This is biology, not some of fucked up mind game I'm playing with my ovaries!

I am also getting my thyroid checked next week. Any other tests that you guys would recommend, apart from the ones they usually run?

Hi Erica and giraffe,

The most common tests that tend to be omitted are:-

Adequate x-rays of the uterus which may show abnormalities not otherwise seen at laparoscopy.

Hysteroscopy - telescope inspection of the inside of the uterus which may occasionally show abnormalities not seen otherwise

Repeated sperm counts over several weeks and months to make sure there is no subtle abnormality

Testing the sperm in special media such as swim up tests and velocity testing. However, when they are done, they often uncover a hidden cause for the suppposed unexplained problem

Thorough hormone tests to detect abnormalities of male hormone or early falls in progesterone

Scanning of the ovaries to see if follicles really are developing and there are no sign of polycystic ovaries.

UK based non woo website re the thyroid gland. I've put it up for you to further read:-

www.thyroiduk.org.uk/tuk/

zippyrainbowbrite Wed 09-Apr-14 10:27:56

Hi,

I had a laparoscopy after being referred to a fertility specialist (all other tests normal, apart from slightly low egg count for my age) - she said she preferred to 'go in' and give everything an mot before we started IVF (had been ttc 3.5 yrs at that point). Turned out I had endo (no real symptoms before) - she cleaned it all away and I fell pregnant the next month!

Am currently sat with 8 month old ds on my lap!

EricaJ Wed 09-Apr-14 11:57:56

Thanks Attila,

I got a hysteroscopy done at the same time as the lap. I will go through the list with my gyno next week, this is really helpful!

Zippy Thanks so much for sharing your story! It gives me hope! And congrats on your baby! xx

worriedmum100 Thu 10-Apr-14 08:03:08

Hi there

I was diagnosed with moderate to severe endo yesterday. I'm very upset that after 2 years of ttc dc2, one round of IUI (which worked but I miscarried) and so many trans vaginal scans I've lost count this wasn't picked up.

I had no symptoms though. No pain and normal periods. I'm angry that I had to pay privately for a specialist sonographer to find it. The NHS weren't interested in us - just "unexplained". Said they could do a lap but if there was anything they'd just recommend IVF anyway.

I have it mainly on my right ovary too. I don't know what to do next. We can't afford private endo surgery and fertility treatment. I'm not even clear on why endo causes infertility. Will have to do some research.

EricaJ Thu 10-Apr-14 10:57:02

Hi worried,

Sorry to see you here. I was also a bit ragey at the fact that I've spent nearly 2 years being 'unexplained' and being told to 'relax and try not to think about it' and wasted to attempts at IUI.

I also had no symptoms (my periods are in fact quite 'light' and super regular) . I am so grateful my gyno decided to check anyway but it feels it's been sheer luck! . I also had endo on my right ovary.

I am not living in the UK anymore but maybe the NHS would do the laparoscopy/surgery if you show them the endo diagnosis? Surely it makes more sense and it's cheaper for them than IVF?

PM me if you fancy venting.

Hugs

Ex

worriedmum100 Thu 10-Apr-14 16:40:00

Hi Erica

I'm seeing the private gynaecologist that sent me for the scan on Monday. He does NHS work as well so will prob ask to be put on hi NHS waiting list. Or we might be able to afford it if we scrap 3rd round of IUI that's currently planned. I'm on the tww now for second IUI.

I'm not even sure if IUI is the proper course now anyway. The sonographer said it was a good option but I've read other stuff today that says IVF is best treatment if you have endo. I'm 38 so don't have time to mess around anymore!

My right ovary is stuck fast and apparently my pouch of Douglas is "obliterated" sad

evilgiraffe Thu 10-Apr-14 16:50:57

Is there any chance of you getting NHS funding for IVF, worried? The NHS funded my laparoscopy (including endo diagnosis, removal, and removal of a fallopian tube), then hormone treatment, and then IVF (for full story see earlier in the thread). I think both my fallopian tubes had endo in - one was completely blocked so was removed, as blocked tubes can leak embryotoxic fluid which is obviously not conducive to conception. If your tubes are a problem then IUI won't help you, as the sperm and egg won't be able to reach each other.

Hopefully the appointment on Monday will give you a clear way forward smile

EricaJ Thu 10-Apr-14 20:01:43

Worried Sorry you are finding yourself in this situation. It's so distressing!

My gyno said that the next step would really depend on what they found out during laparoscopy. I was grilling him with questions trying to figure out the most likely outcomes, but he made it clear that he would have to see where the endo was and how advanced and how much he could remove we could find out way forward.

Sorry, that's probably not super helpful but my impression really was that endo doesn't automatically mean you need IVF.

Hopefully giraffe is right and NHS can help with the laparoscopy and the removal!

This is all so hard, sending you hugs.

Ex

EricaJ Thu 10-Apr-14 20:06:38

It's only a small study (43 women) but I thought it was interesting ...

www.ncbi.nlm.nih.gov/pmc/articles/PMC3630290/

worriedmum100 Mon 14-Apr-14 09:45:04

Thanks Erica, very interesting study.

I saw my gynae today and he wants to do a lap as soon as possible. So at least he thinks its worth a go. I'm scared though sad

We can't get NHS funding for fertility treatment because we already have a child. The surgeon said we could wait for lap on NHS but could be 5 or 6 months and I don't want to waste any more time so I think we'll have to try and find the money. If we pay we can basically pick a day. Seems wrong really.

Those who have had laps how long was the recovery? How painful was it?

EricaJ Mon 14-Apr-14 10:00:35

Hi worried,

Sorry you are going through this, it's stressful. However, personally I feel relieved that there is a (potential) reason why we were having so many difficulties to get pregnant. It doesn't matter how many 'positive' studies I read, after 2.5 years, having a child has become as impossible dream as winning the lottery but taking action and finding results really helps.

I was super scared of the surgery, I am the most squeamish person in the world and my pain threshold is beloe zero! However, it really was not bad at all. My surgery was performed at 8am, I was back in my room before 10 am and I had a big lunch at midday. I was really tired all Tuesday (that would be the general anesthesia) and a bit sore on Wednesday but by Thursday I was back to normal, if taking it a bit easy. I only took some painkillers the morning after the surgery, other than that it was absolutely fine.

Good luck!!! x

evilgiraffe Tue 15-Apr-14 21:57:26

Ah, I see. It's a shame that the waiting list is that long for a laparoscopy on the NHS, but I can understand the reasoning behind funding IVF only for childless couples. Fingers crossed saving up doesn't prove too difficult (or lengthy).

When I had a laparoscopy, it took quite a while to feel normal again. The first night was hard as I had to wake DH up to bring me tramadol, but otherwise I was on paracetamol and diclofenac, which dealt with it nicely. To start with I needed a lot of help from DH to get up and down from chairs, bed, toilet, and the car, but by the second day that was easing. I took painkillers for about three weeks in total, but was weaning off them from about the fourth day - increasing gaps between taking more etc. Over all that time it didn't hurt acutely as such, it was more of a really deep aching sort of feeling.

That sounds like ages in comparison to Erica! My laparoscopy was quite invasive, though. I was in theatre for about two hours while all the endo was cut out, and one Fallopian tube was removed, so there was a fair bit of internal healing to do. I had quite impressive bruising on the left incision, where the tube was pulled out. It all healed beautifully, though, the scars are very small and neat, and they aren't causing any problems now I am pregnant.

Sorry for waffling! In short: it'll be fine, don't be a martyr about painkillers - take them if you need them, and make sure you've got someone to help you for the first 24-48 hours after surgery. Oh, and get some comfy clothes - big pants and no tight waistbands smile

EricaJ Wed 16-Apr-14 12:48:16

Hi!

Love it Evil - 'Don't be a martyr about painkillers' - damn straight! As if we are not all going through enough! smile

Just back from gyno. He confirmed that the endo was removed and that it had not damaged any organs. However, he recommends that we try IUI twice more.

Basically, we are trying naturally April and June and IUI in May and August (July is a break mainly because we'll be in different countries). Which means that we have 4 months before considering IVF!!

In the meantime I am taking Duphaston (as opposed to Cyclogest) and Letroz instead of Clomid - anyone any experience with this?

Evil please tell me it's not that bad!!

EricaJ Wed 16-Apr-14 12:51:34

Oh, apparently Letrozol is the same as Femara!

evilgiraffe Wed 16-Apr-14 14:31:35

I was never on clomid or any IUI drugs, so no experience of that, I'm afraid. Zoladex for three months (implants at one-month intervals) was quite horrid last summer, as it was so hot anyway and I was getting hot flushes all over the place. I have huge sympathy for menopausal women now I have a glimpse of what it's like! By comparison, I found the downregging drugs for IVF quite easy - certainly fewer side effects. I get the impression that I'm quite unusual in that I had very few side effects from the IVF drugs in general, though - lots of people feel terrible but I really didn't. I found it all quite stressful before we started, but once I was injecting myself every day I actually felt much better - we were finally actually able to do something about our infertility rather than waiting for doctors to tell us things or just plain waiting for referrals and suchlike. We went into it feeling quite pragmatic too, we mentally planned that we'd be doing three cycles, assumed they'd fail, and then we'd make a decision about doing more or not. Actually getting a positive test on the first cycle was a huge shock, so despite it being an IVF pregnancy it's also very much a surprise smile

EricaJ Wed 16-Apr-14 17:28:36

Thanks Evil!

Many people say that IVF is not that bad , which is very reassuring, and I am with you with the relief that comes with feeling that you are finally taking action.

On the one hand, I feel I want to find out more about IVF so I am prepared. On the other hand, I know I should take it one day at a time and not start obsessing now about what we might do or not do in August/September.

Sometimes I wonder what I used to do/think about before TTC! smile

Fankletastic Sat 26-Apr-14 15:17:24

Hi erica
I've just found this thread so hope it's not too late to join in and share my experience.

Similar to you, been ttc#1 for 2.5 years. Got pregnant within 3 months but sadly miscarried in January 2012. Nothing since! We have both been tested and diagnosed as unexplained as they didn't find anything wrong with either of us (although my amh was a bit on the low side but my FC wasn't too bothered by that). I'm 35 now. I keep thinking I should have had my baby aged 33 and be ttc my second now sad

Last august I was prescribed clomid 50mg for 6 cycles. I stopped after 3 and went back to my FC (asked for an earlier appointment as wasn't due to see him again until 5th clomid cycle) because I didn't like the side effects and I felt it was messing up my cycle and shortening my periods. I pretty much asked for a laparoscopy as I'd been discussing asymptotic endometriosis with a friend who had had it (and who had conceived soon after having a laparoscopy). I didn't really believe that I had endo, although I had been experiencing some mid cycle twinges and occasional sharp pain during sex. My FC was happy to perform the lap and booked me in for surgery in January 2014.

He DID find I had mild endo in the pouch of Douglas and removed it. I didn't find the operation too bad (and it was my first ever surgery so I was really nervous - I remember shaking a lot on the table as they were getting ready to put me under)! But it was fine!

So now I'm on my 3rd cycle after the lap. I fully expect my period to show up around 2nd May. I know there's a better chance of conceiving in the months following a lap but I have to keep reminding myself of that because I've become very hopeless and despondent after more than 2 years of failed attempts. (Like you said, I too feel there's probably more chance of winning the lottery)!

I'm going to try two more natural cycles (maybe going back on clomid to finish my prescription...and see if it helps) and then try iui in July. I simply can't wait any longer....it's making me quite depressed.

Sorry for the essay. Hope your luck will turn now you've had the lap

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