Endometriosis and infertility

[thechocolatefrog]

I've just been diagnosed with endometriosis and an inguinal cyst suspected to consist of endometrial tissue. The endometriosis is in my uterus and around it and in my 'pouch of douglas'. Doctor described it as small lesions and did tell me not to Google as it 'isn't like that'.

Upon deciding not to listen to the doctor and using doctor Google it has said that endometriosis in the pouch of Douglas is a deep endometriosis that is linked with infertility...

Pls pls pls can somebody help/advice. I have an appointment next week in which I'm hoping I'll get further details but I'm absolutely distraught.

I am absolutely petrified and beside myself thinking that I could now be infertile.

@thechocolatefrog I had a lap / dye test 2 weeks ago and was told endo, fibroid, left ovary adhered to my bowel and my left tube was kinked. We've been TTC for just over 2 years and referral has gone to the IVF clinic but to keep TTC in the meantime. My mental health has been in the toilet since procedure as I didn't get enough info at time of my lap to help me process all of what the surgeon told me while coming round from GA. I'm awaiting an outpatient appointment for more information. I've found endometriosis UK a great source of information and support ❤️

Hi OP.

I'm not sure how much comfort this will bring you, as I'll be honest in saying that it's been a rough few years, but on the off-chance that it does, here goes:

DC1 conceived within 3 cycles (aged 25). Now, I hadn't it officially been diagnosed at this stage but historically had always had horrendous periods so I'm going to assume that it was already there.

Started TTC DC2 4 years later. Nothing was happening and proper investigations began - note these were related to my inability to conceive, I still had no idea of underlying cause at this stage.

Finally diagnosis with stage 4 endometriosis. Chocolate ovary on one cyst, POD covered, bowels stuck in places. Both tubes completely ruined by scar tissue.

I went through 2 cycles of IVF and one natural pregnancy - all miscarried unfortunately. There were also 2 x laparoscopies during this time.

It was eventually discovered that one tube was full of fluid (hydrosalpinx).

During my most recent laparoscopy this tube was removed as there had been a chance it was leaking onto (and subsequently destroying) any embryos.

We began one final cycle of IVF which was a complete non-starter as my eggs weren't responding to the stimulation.

We gave up and moved on.

Then, you guessed it, I conceived naturally 6 months later. DC2 was born last year.

I'd imagine there was some degree of the age-old 'it'll happen when you stop trying' shite that gets trotted out to people desperate to conceive but unfortunately there's no 'stop trying' switch when it's all you want!

But here I am, two children later. It can happen

Good luck to you

@JawboxGinger

Thank you. It does bring me comfort knowing that you did eventually get there! It's just so terrifying that I'm now facing an idea of a life without a child.

The thing that I'm hurting with is that this is just the beginning of our ttc 'journey' and to be faced with this so quickly has just mentally destroyed me. This will only be our second cycle so I know it's very early days but I'm struggling to think positive. Even when ttc I'm crying throughout as I just think what's the point! Im terrified my pain problem is going to be the fluid on the tube - unsure if every case of fluid on a tube is hydrosalpinx or if there are other explanations. Gyno did say that the fluid could just be temporary due to an infection at the time and could just go on its own. I have been tested for infections and that's came back negative. This was all discovered via an mri too.

It's taken me many years to get to the point where I am in a position to ttc - I've always dreamt of this day. And now I'm faced with the possibility that, actually this might not even happen at all! I know so so many people are met with this horrendous situation too - but I do feel extremely alone surrounded by friends announcing pregnancies etc.

Did your endo pain decrease at all over the years you suspected it? I know that endo stages aren't necessarily based on pain levels but my pain is at an absolute minimum. I would never have gone to the doctors about it!

Being in the throes of it can make it difficult to see any sort of positivity, but starting your TTC 'journey' knowing you're in this position is definitely giving you more power and control over the situation - in hindsight I would never have waited 4 years to try for number two.

Unfortunately my stage 4 correlates with the pain level and has been consistent throughout.

Hi @thechocolatefrog, how are you getting on? I feel like I’m at the beginning of the same process as you (ttc for a year and just been told I have an endometria), not sure what is next for me but I’m worried

Wow this story is so inspiring! I thought an endo diagnosis immediately means surgery and ivf… so your story is very reassuring.

Loved reading your story. Thank you so much for sharing. How wonderful that you got your two children in the end!

I was just told I have an endometrioma cyst however my doctor wasn’t overly concerned because it’s only 2cm. But when I googled, it said everywhere that an endometrioma equals a severe stage endometriosis! In that moment I literally thought I’ll collapse from shock. I have zero pain or symptoms of it and simply cannot believe that this might possibly be true. My biggest dream was to have a large family and then I might be faced with this? I worry that natural conception might not be possible and it’s all just about surgery and IVF… but luckily stories like yours give me a glimpse of hope. I have literally been crying all day since finding out about this cyst.

Hey, I hope you don’t mind me jumping in too.

I just want to reassure you, but also push you to pursue further investigation/surgery in terms of endometriosis. GPs and doctors weren’t concerned about my 3cm endometrioma too, but the fact is that you’re right, it does indicate more severe endometriosis, and it needs addressing whether you have classic endo symptoms or not.

i had been ttc for 18 months by the time mine was discovered, with no positive test whatsoever. every GP tried to convince me that the endometrioma wouldn’t affect my fertility necessarily. One even said that it didnt mean I had endometriosis (it absolutely does!!). I ended up going private, and an MRI revealed that my ovaries were stuck behind my womb (amongst other endo-related issues). There would have been virtually no chance of conception! I was diagnosed as stage 3 and told surgery was my best option.

I had my endo excision surgery in early March (they did a hycosy and hysteroscopy at the same time whilst I was under general anaesthetic), and by mid April I was pregnant. I’m currently 25 weeks and feeling lots of kicks 😊

I always dreamed of a big family too and I felt like the news of the endometrioma/endometriosis was the end of the line for me, it was devastating.

im not sure where you’re based but unfortunately with endo you really have to advocate for yourself - push for referrals and further investigation as much as possible. Of course your situation and anatomy could be totally different from mine, but that’s precisely why it’s worth looking into more.

There absolutely is hope for you. Your cyst is small, which is a good sign too. I completely resonate with how upsetting it is but there is light at the end of the tunnel - just keep going 💕

Apologies for never replying to this. I just wanted to let you know that I have read this message and really appreciated it, I just wasn’t able to reply right away, I felt deeply shocked about this news and needed some time to process. Congratulations on your pregnancy, that is so wonderful that you managed to get to this point!
I am still processing and taking it one day at a time, will definitely investigate further and am in the process now. Massively hope that I will be able to build the family I have dreamt of eventually, whenever that might be.

Hi @Kateeeeeeee

I know you posted a few weeks ago, but I am going through something similar. After monitoring two cysts since March (one they initially thought was a dermoid) my fertility clinic now believes they are Endometrioma. I’ve never had any symptoms so it’s completely floored me to be honest. TTC 11 months.

The consultant didn’t seem concerned and encouraged me to still start Clomid (I have PCO). She said as both cysts are very small (around 1cm) she wouldn’t have a laparoscopy. She also said it doesn’t mean it’s stage 3 or 4(which contradicts everything I’ve read). A second consultant at the same clinic advised if it’s my aim to have a baby and I’m not suffering with symptoms, with my age (>35) they would also recommend trying Clomid then IVF. I’ve booked an appointment with the GP anyway this see if I can get a gynae referral.

I know I’m so lucky to not have any symptoms, but it’s been a shock and causing me a lot of worry about the future. If you’re happy to share, I’d be interested to hear how your journey goes and any advice …

xx

Hey!

Thank you for sharing your story. This is all so strange and I am not much wiser yet.

I had a repeat scan yesterday (3 months after the first) to monitor the cyst and I had hoped it might have at least reduced in size but it is the same size as it was before sadly. I guess I am grateful that it hasn’t gotten worse.

We did my husband’s semen analysis since we wanted to know how that looks and actually was surprised to see that all his parameters were very good and high, however his morphology came back very low as the only marker off. After reading some more, apparently this can also cause longer time to conception so I started wondering whether the main issue is with this, instead of me… I guess it’s impossible to tell at this point.

We are being encouraged to try for a little bit longer since at this point it has been 6 months, and we are being told to be patient for now. I was told by gynaecologists that the cyst shouldn’t affect my ability to get pregnant but again, I can’t fully trust them. They suggested that if we get to a year with no success, as a next step I should consider a HSG test to check if my fallopian tubes are open.

I am going holistic for now and working with a Nutritional therapist which is something I HUGELY recommend. They suggested to do a vaginal microbiome test which can give us a lot of clues as well. When I get those results back I will receive a personalised action plan and I am already starting some things. Apparently taking serrapeptase and NAC has been shown to reduce scar tissue, cysts etc… I have been taking NAC for a while now and obviously haven’t seen a reduction so far but only just started serrapeptase so very much hope to see this one working for me.