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.

I don’t know about your situation, and no one in here will know. I can hear that things feel raw and up in the air at the moment but just want you to know that this isn’t the end of things, I have endometriosis and never had biological kids but have the biggest and most loving family through adoption and blended family. I genuinely have no regrets at all about how my family came about and wouldn’t change a single thing.

Just take care of yourself, you can do this

Hugs x
I have endo and after surgery, a loss, medication and lots of tears I finally got my baby. All hope isn't lost. I had stage 3 and my insides were very much a mess, so don't freak out just yet x

@squirrelnutkins1

Thank you so much.
Do you mind sharing whereabouts your endo was discovered? Xx

Fallopian tubes and bowel, they were stuck together and inflamed I had a cyst as well. X

Try not to panic until you have seen the dr again. I have had two laps due to endo grade 3 1st time grade 2 nd time. I now have 2 dc. Endo doesn't always mean fertility issues. Did they due a dye test on your tubes to make sure no issues ?

I have stage 4 endo. It was everywhere. I had two lots of surgeries to remove it. One was because I had collapsed with pain at work and they thought a cyst had ruptured and found endo and then the second one with with a fertility specialist as the first surgeon was worried he might not do as good a job at preserving fertility if he was just let loose on removing as much endo as he could.

Anyway, I was convinced I wouldn’t have children as I also have pcos and very erratic cycles. I saw a fertility gynae specialist (the one who did my second surgery) and after the surgery I was told to wait 6 weeks to recover then I would re-start clomid. I had already tried clomid prior to the surgery for two cycles but I had a very early miscarriage. 4 weeks after surgery while still on sick leave, we did the deed and I fell pregnant. 2 years later I fell pregnant again. My periods suddenly regulated for three months and so I used an ovulation tracker and fell pregnant on month three. It’s the only time they have been regular.
For baby number one from trying for her to my endo diagnosis and two lots of surgery was two years.

If you are Kent way at all I can recommend a fertility specialist.

@boymum88

Thank you for replying.
I've had absolutely nothing other than ultrasound and mri. I initially was diagnosed with a groin hernia upon gp inspection. Ultrasound was inconclusive. Mri determined an inguinal cyst with small endometriotic lesions in uterus and around uterus and pouch of douglas xx

@vodkaginwine thank you so much for replying. That sounds absolutely terrible for you but I'm so pleased you have seen improvement now.

Not based in Kent unfortunately. I'm hoping that at my appointment they can tell me if there is a chance of infertility or not. The only thing I'm clinging to is that the doctor (phone appointment with my mri results) said the lesions are small and not to Google it as it's not like what I'll see on Google (?!).

I get very bad period pains which have eased over the past year quite substantially, pelvic pain etc. the standard endo symptoms xx

I have endo as chocolate cysts in my ovaries. Fobbed off for years, got pregnant with DD after years of trying. They wouldn't do anything in case the cyst stuck to ovary and I had to have it removed. In the end I did have the cysts removed and they had started to affect my tubes. Never managed to get pregnant again.

@thechocolatefrog Demand to be sent to a gyne that specialise in endo. Endo is also best diagnosed via laparoscopy. The surgeons have lots of ways of removing it, so you can get relief from pain and symptoms. Sadly it is a chronic condition so can keep coming back but with treatment can be managed

@boymum88

I have been referred to a gynaecologist but the surgeon initially is sorting the cyst then he was unsure if to sort the endo too due to my pain symptoms easing as that was a good sign. Pain has definitely improved - over the past 10 years I've been in agony with periods but since around 2020 the pains massively changed and the periods have been fairly easy x

Hi there, I have endo on my uterosacral ligaments and also on pouch of douglas. I've had 2 laparoscopies 5 years apart to remove the endo adhesions and I struggled with unexplained infertility for the last 4 years. My tubes were clear and unaffected by the endo so I was told it wasn't a factor in our fertility. We were due to start ivf last year but I wanted to do a second laparoscopy as my monthly pain had returned. Sure enough I got pregnant straight away after that lap, totally unexpectedly! Am currently 32 weeks pregnant and all good so far!
I too had googled POD endo and read about the link with fertility. I'm assuming maybe the inflammation caused by the endo was what caused our infertility but I don't know for certain.
I would 100% advise you to be referred for a laparoscopy that will formally diagnose and remove your endo. Good luck!

@Lilypad121

Thank you so much - pleased there is somebody else out there with the same diagnosis! (In the nicest way possible!)

Due to my symptoms of pain being considerably less my surgeon isn't sure about doing the laparoscopy due to potential after effects. I'm not sure if I need to push for the surgery or not??!

Was your endometriosis in your uterus and POD large if you don't mind me asking? I've been told mines 'small lesions' but I've not seen the surgeon in person yet to discuss fully.

X

Hi, I’ve had stage 4 endometriosis with it in POD, bladder, bowel, ureters, US ligaments, both pelvic sidewalls, diaphragm. Also have PCOS and adenomyosis (and other health conditions). I had three years TTC no 1 but we did get there. No 2 was conceived very quickly after no 1. Had 2 MC trying for no3. Again we got there and ive got 3 now. I was diagnosed after having my kids when I was unable to function due to pain.

I second the suggestion to seek out an endometriosis specialist who will do excision surgery to remove it. Look for their reviews. Some surgeons do ablation which as I understand it does not fully remove the endo, only the top layer and the endo below remains. Nancy’s nook on Facebook is a good place to start.

It really does suck but I really hope you get there. Xx

My doctor didn't say if it was large but he said it was found predominantly on my right ligament and POD with a spot on my left ligament. I was having quite a lot of pain in the months prior to my second lap.

If he's not recommending surgery has he advised you of any treatment suggestions? As PP has said excision via a laparoscopy is the recommendation now. I also agree that Nancy's Nook is a great place to start, I've found it to be an invaluable help. They have an active Facebook page with loads of posts and advice on where to start. You could request to join it and see what you think?

@Lilypad121
My surgeon hasn't recommended anything yet other than removal of the inguinal cyst which he suspects consists of endometrial tissue. The cyst is causing me pain and pressure but he has mentioned it is a superficial cyst and not deep rooted. This is being removed asap.
He then suggested doing the laparoscopy at the same time with a gyno to save me having two operations. I then said that the pain over the past year has drastically eased - I've gone from being in crippling, agonising pain during my periods to them being so, so much easier. Although I am questioning if this is actually me being used to pain and having a higher pain tolerance but surely not?!!
Surgeon then said it's a good sign that the pain has decreased so I might not need the surgery after all as it can have complications afterwards but he will refer me to gyno anyway.

I've got such mixed feelings about the surgery as obviously they can see endo but without me having the cyst and mri I'd have never gone to the doctors about it as it's eased so much?! I'm just petrified of my fertility but I'm going to ttc after my cyst removal and hope for the best! Kicking myself now as I'm 30 and wish I'd looked into this years ago when it first began.

I joined Nancys Nook last night :) x

I have stage 4 endometriosis including a completely obliterated pouch of Douglas (my bowel and uterus are completely adhered) and I have adhesions all over my lower renal tract. That said I’ve managed 4 pregnancies in the last 10 years with no surgery required or treatment.

The main issues for fertility seem to be caused by adhesions on the ovaries and the Fallopian tubes being stuck or damaged, tubes being especially important. I had lots of twinging pains whilst in pregnant but labour and birth were no issue at all despite having an immobile womb.

My pain has waxed and waned over the years, it’s horrendous now I’m perimenopausal and I ended up having endometrial ablation in 2020 but I’ve found coping mechanisms and herbal remedies that help more than the endless opiates (I’m an especial fan of cbd!).

Don’t lose heart, it’s a shit disease but infertility is in no way guaranteed.

@Createdjustforthis

Wow this is EXACTLY what I needed to hear 🥰🥰🥰

So pleased that you have managed to have 4 pregnancies despite everything - that fills me with so much hope.

Thank you so much for commenting xx

@vodkaginwine what fertility specialist did you see in Kent? X

I have endo on the back wall of my uterus, pouch of Douglas, urosacral ligaments and they also suspect my bladder and bowel.
I had a lap in December 2020 but not by a specialist and now awaiting a second lap by a actual specialist this time.
Had symptoms since I was a teenager and was fobbed off with being told it’s ibs or “normal”
Been ttc for a 5 years i have just turnt 30 and was given clomid before endo diagnosis but it didn’t work. Not sure what’s going to happen after the next op. X

Hello,

Just wanted to update all of you in the hopes that someone has some positive experience/advice for me.

Saw the gyno who has said that I have some fluid on one of my Fallopian tubes and it is elongated. To say I'm devastated would be a complete understatement.

He has advised I ttc naturally whilst I'm on the waiting list for dye test, laparoscopy and hysterocopy. If I do manage to get pregnant he says that's great but I will need more scans earlier as there is an increased likelihood of it being ectopic.

Has anybody else had this and found any success with conceiving naturally? Dr Google has absolutely destroyed me as everywhere I'm reading about this says that the chances of conceiving naturally are very slim and the only way is through ivf.

I asked about everything else and he said everywhere else looks fine for ttc. I didn't ask the right questions there and then as I was in complete shock and have never heard of any of this before.

Please please can somebody enlighten me or help in any way?? Thank you so much

Bump

Hi @thechocolatefrog

So sorry to hear you are going through all of this. Endo really is a bitch, thought I’d share my story to hopefully give you a little hope.

I was diagnosed with Endo in POD, Uterus, Ovaries and rectum when I was 20. Was told it would be a struggle to conceive etc but when ready to try naturally. Anywho, my husband and I were ready to try after we married when I was 27 (we didn’t want to try when I was so young, plus he just started uni so we made a decision to just wait until older and see what happens)
After we married I had my 2nd Lap for Endo in Oct 2015, in December 2015 I fell pregnant naturally with our now 5 year old daughter.
Roll onto 2018 we were ready to try for baby number 2. Again I feel within the 2nd month of trying and again naturally but sadly miscarried and needed emergency surgery. It was then they discovered my Endo was at a stage 4 and was everywhere! They also diagnosed severe Adenomyosis. I was told I would need more surgery but to TTC whilst waiting. I then had another lap but sadly didn’t fall pregnant again. We tried for nearly 3 years and just didn’t fall. My health started to deteriorate so it was decided that I needed to stop TTC and start monthly injections to put me into the chemical menopause and await to total hysterectomy. This was a hard decision by the right one for us as a family as I was becoming bedridden with my symptoms from Endo and Adeno.
I was put on the waitlist for an urgent hysterectomy in 2020 but it was delayed due to covid. Fast forward to Aug 2021 and I found out I was pregnant with baby number 2! To say we were shocked would be an understatement. I am now 36+3 weeks pregnant and honestly still find it surreal that we will be meeting our second baby very very soon.

Yes Endo can prevent fertility but in all honesty it doesn’t always make you infertile. Hopefully after a lap and some management your pain and symptoms will ease and you can go on to have to family you truly deserve. Please don’t feel helpless and hopeless and I know so so so many women who have gone on to have happy and healthy babies it’s severe Endo. I run a support page on Instagram called Memywomband_I and talk about all my Endo experiences, fertility and more.

Please do be open with your consultation about wanting a family and what options are available and go from there. Sending lots of love x

@Nurselife2020

Thank you so much, this is comforting at a time where I just can't find any comfort at all.

My endo pain/periods are actually fairly easy now and have been for a couple of years. I went to the gp regarding a cyst I had in my groin that I could feel externally. If not for that I wouldn't have gone regarding the pain as it had eased so much over the last couple of years! Whether or not this is a good thing I don't know. I don't actually take anything for pain management other than over the counter painkillers on my period!! I am extremely lucky that my pain has majorly subsided however I am concerned still.

I've been ttc for a couple of months and it was at the gyno appointment that he mentioned the fluid on one of my tubes and I've been terrified ever since as im so scared this means infertility. Google has been extremely unhelpful as I can't find much positivity at all.

Thank you so much for replying to me xx