Hello everyone. Firstly I just want to say that this community is so supportive and already I am preferring to spend my time reading, and giving support in comparison to scrolling through Facebook looking at absolute rubbish!
Myself and my partner have been TTC our first for almost 2 years. I've had all the tests and so has my partner and all have come back normal, so we have been referred for fertility treatment. As time has gone on and the monthly pains that I've experienced for years and years have continued.. I've researched endometriosis. Without sounding like a hypochondriac.. I have experienced every single symptom and continue to have progressive problems each month which now include regular pelvic pain.
I recently paid for a private Gynacologist appointment and he recommended a lapariscopy because of my history and because he could feel a soft mass on the left side of my pelvis which is where the pain is.
My question is, I'm guessing that the sensible thing to do would be to have a laparoscopy prior to beginning any fertility treatment. I guess the Gynacologist will advise this too but I'm just checking that this is the sensible and best thing to do.
Naturally there's a chance that IVF would work even if I had endo so the impatient person in my head is trying to push me into avoiding a laparoscopy and just going down the treatment route - what do you guys think or what experience do you have of endo and IVF.
Thanks and best wishes to you all,
Xx
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Faith27
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Hi Faith, see this journey as a detective series, the more you discover and understand about what is going on inside your body, the better able the specialists will be able to advise the best treatment for you. I suspect, they will want to check your AMH levels to see your egg reserve levels, take swabs to look for infections, do a Hycosy to see if your Fallopian tubes are blocked etc. My hycosy didn’t go to plan & they offered me a laparoscopy but I declined. The only reason they suggested it was to see if my tubes were damaged or blocked. I asked them “do we need to do know this to proceed with IVF”, their answer was no. Then I asked could we do it after the IVF treatment if it’s unsuccessful and they said yes. No one has ever mentioned it since! Downside is I don’t know the state of my tubes! 🙁
However, if they had felt a mass I think I would have wanted to know more about it, and know if there was any risk of it interfering with my IVF treatment.
Yeah that's true. Although internal and external scans and multiple tests have shown nothing so I'm adamant it's either endometriosis or bowel issues as he said it was pretty far back. Until they look inside, it's hard to know isn't it xx
Thanks Jengi for responding! It is very much detective work isn't it. Sorry to hear that your one test didn't go to plan and that you are unsure about what's going on inside but fingers crossed for your IVF - it sounds as though that's the next step for you? There's such a high chance that IVF will work regardless of issues from what I read so fingers crossed it will be straight forward for you and the only future tests you will be having are pregnancy related!
I'll have a good chat with the specialists as soon as my appointment comes around and go with their suggestions - you're right. Thank you xx
Hi, I only found out I had endo when I when for our first ivf appointment. My consultant wouldn’t start ivf until I had a laparoscopy and the endo was treated. She told me I stood a better chance of it working. Although all consultants are different. We went private to speed up the operation and in turn meant ivf wasn’t pushed back. The endo has stuck to my tubes but as we went private it meant that our ivf consultant did the operation, which meant she was super careful to ensure we stood as much a chance if ivf working as possible. After two rounds of icsi I now have a 6 week old. If you have any questions I might be able to help with just ask xx
Thank you so much for replying! It sounds as though rushing for IVF when there could be reatment that can assist with aiding pregnancy is a silly idea and your evidence that patience pays off - I'm so pleased to read that you have your little one! Thats such amazing news. I can see why you went private to speed things along - waiting is hell at times! Your post has really helped with my concerns so thank you ever so much xxx
Hi no worries, if you need help with a time frame I waited 6 weeks for my operation I had it on the 14th July and started icsi on the 18th September. We were not given the option of ivf as my partner has slow mobility and I had undetected endo for at least 10 years so my egg count was really low. Icsi was a better option as we stood more chance xx
Thank you for explaining that to me. I'm so glad it all worked out for you, your little one is gorgeous. Congratulations and I'm so glad it all paid off xx
I would definitely want to know what was going on in there!! Especially as it sounds like it's getting worse.
I had an MRI scan to check for endo while I was doing fertility investigations. Could this be a (non-invasive) option for you? (Have to add, I don't live in the UK and this was done at a time when we had amazing health insurance, don't know how available it is on the NHS!!)
Hi thanks for commenting! Did the MRI show any signs of endo? I hadn't realised that this type of scan would show up endo as always been told a laparoscopy is the only way. I'll raise it with the specialist as I'm not sure if that's an option for me on the NHS but thank you! It is a worry that it's getting worse and there's clear progression if it is endo unfortunately. Add that into the potential fertility issues at just 26, it looks likely but who knows! Thanks again xxx
MRI showed the pelvis all clear and normal. I never had any symptoms of endo, the exam was just to rule it out and, as I said, we had a great health plan that covered just about everything so I guess the Dr. thought - why not?
You're probably sick of hearing that "time is on your side" but while obviously you're at an age when you should fall pregnant no problem and it's frustrating that it's not happening, if the problem does turn out to be 'mechanical' e.g. endo is blocking something, egg quality is better when you're younger so if you can resolve the mechanical difficulty, or if you need to turn to IVF, your chances are really good xxx
Thank you, yes you're absolutely right and that's why I'm glad we began trying at quite a young age! I'd never been the type to want children early on so I'm counting my stars that we are having these issues when we are prime age to try and sort things out. I can only imagine how much more Id be panicking if I was older so thank you for that. It's the waiting that's the hardest for me because we can keep trying and trying until treatment or further investigations and all the trying and ups and downs during all this time will have been in vein if something shows up. But we're that far in now (I know it's not that long compared to some) but far enough to start getting things looked at so fingers crossed. Thanks again ☺ xx
I am in a very similar boat to you! My husband and I TTC for 2 years, all tests were normal. Then went private and as I had health insurance (I live in New Zealand and the public system isn't great) my specialist decided to do a laparoscopy (even though I had no symptoms of endo) and that way she could check my tubes also as I had previously done the dye test but it was too painful and they had to withdraw care so it was inconclusive if my tubes were open or not.
Anyway, did the surgery, turns out I have stage 3 endo, which she fully removed and checked my tubes they were fine, so we were told to keep trying and look at IVF if nothing happened.
That was in October, and we have decided to proceed with IVF and are starting our first cycle next week. My specialist has said however that doing the surgery prior to IVF is beneficial as it makes sure that you have your best chances of success by clearing everything out... so I would advise for the surgery before IVF Fingers crossed for you!
Hello thank you so much for replying. That information is all really helpful and yes very similar situation to ourselves. I wish you the best of luck for when you begin your cycle next week! Xx
Hi Faith, I would definitely have the laparoscopy before starting ivf. We were ttc for a year before having a laparoscopy which found stage 4 endometriosis and a huge cyst on my left ovary which they incised and drained whilst they were in there. As my tubes were clear, my consultant recommended 6 months of clomid fertility treatment before jumping straight into ivf. Unfortunately this didn’t work and we were referred for ivf. It has been a long journey for us since then with 3 more laparoscopys along the way but we are now 37 weeks pregnant and due to meet our baby tomorrow following a frozen embryo transfer from our second cycle of ivf!! If the consultant recommended you have a laparoscopy, you should go for it. I’ve had ultrasound and mri scans along the way but I think the laparoscopy is the better diagnostic tool and would mean if you do need ivf you’ll know what you’re dealing with first. Good luck! Xxx
Hi Sarah, thank you for your message. I'm so pleased for you and that it has all worked out!! That's amazing news, good luck for the future lovely and you're right - best to know what we're dealing with first. Thank you xx
I have endometriosis which was found after TTC 5 years & 10 months. We conceived naturally twice after it was treated ( first was an early miscarriage ) I am now 19 weeks pregnant my third laparoscopy ( long story!) & 7 years of TTC we got our miracle.
It is important to say that not all women with endometriosis will face fertility. It will depend on severity & location whether it will impact fertility. Mine grew ( and rapidly back) on my pouch of Douglas ( that’s between back of uterus & rectum) uteroscaral ligaments ( that is the uterus ligaments) & rectum. In my case it prevented implantation. I also like you had every symptom going with including chronic pain lower left side. I had both gynae & bowel issues, made it harder to diagnose!
Unfortunately with endometriosis you it doesn’t show on an ultrasound ( unless you have the classic chocolate endo cysts; I didn’t) only a laparoscopy will show it up, only then will you know you have it & where it is. If it is severe or complicated endometriosis ( mine was!) is it growing on another organ not gynae ie bowels etc you will require a laparoscopy to be done by an endometriosis specialist. No gynae should attempt severe or complicated endometriosis. They have to be be BSGE registered ; you can find your local centre by coding bsge.org.uk
I would have the laparoscopy before IVF so you know it has the best chance of working. You might even fall naturally after it’s treated!
I am happy to answer any questions you have on laparoscopys ( I’ve had 3 laparoscopys within 13 months!) they’re not that bad.
I would also advise keeping a pain diary; there is a template of one on endometriosis-uk.org & you can present to health care provider & see if there are any triggers that make your symptoms worse. I found my biggest culprits to be dairy & gluten. Once I’d gone dairy & gluten-free it improved ( I was having so many pain attacks)
My fertility doctor agreed I could have progesterone pessaries from a Positive test till 12 weeks ( just naturally ttc) as ladies with endometriosis can have lower progesterone levels. It is very estrogen led. I also took prednisone from a positive pregnancy test till 12 weeks agreed by fertility doctor ( I had raised nk cells tested privately) I’m sure these helped keep our baby safe💗
I used progesterone cream, took bee propolis ( very healing for endometriosis) low dose aspirin ( 75mg) to suppress my endometriosis ( aspirin is ant inflammatory) & followed the anti inflammatory diet till I got my positive test. I’m sure they played a part in us conceiving
. Sometimes a bit of research is really beneficial ❤️
Having waffles on I’m going to wish you good luck. Keep believing your time will come ✨❤️ xoxo
Jess, I don't know what to say. Thank you so so much for all of that information and taking the time to reply. I'm so glad to hear that your story has a positive outcome and you're clearly evidence that even with endo being diagnosed, with patience, hope and persistence is clearly pays off!! I'll be sure to do my research and look into the links and info you have shared. I'm nervous for the laparoscopy but keen to find out what the issues are. It's definitely a good idea to have that before fertility treatment to give it the best possible chance of working. Thank you xxx
Hi Faith27, I was advised to have the laparoscopy first, then a 4 month period of trying to conceive naturally and then IVF. I guess I would do whatever the specialist advises. Xx
Thank you! I've also read information about waiting a certain amount of time after surgery before beginning treatment- I'll raise it at my appointment, that's really helpful. Thanks xx
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Fingers crossed for you! 
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