New to endometriosis and fertility referral

[Dylan8523]

Hi all, I’ve been having a really tough time trying to conceive for 18 months and have never been pregnant, I am 34. I have been sitting on the NHS waiting list for my first telephone triage appointment with the fertility clinic and this is finally happening in a few weeks.

Because I was freaking out I used my private medical insurance through work to see a gynaecologist at Bupa- they don’t cover fertility but will investigate period pain and I was starting to wonder if my pain was normal, it got really bad when I came off the pill. I was really just looking for reassurance but was diagnosed with endometriosis with an ovary stuck to my uterus (adhesions) and an endometrioma (cyst) on the other ovary. A laparoscopy has been booked but I left the clinic in tears and feel like I haven’t stopped crying since.

Probably psychological but I feel like my abdominal pain has been even worse now I know what it is, feel like my insides are being shredded while on my period and left feeling bruised for a long time after. I am off work today for the first time, and getting into a big spiral about the reality of being a person that has to miss work because of a chronic condition.

A few questions for anyone going through similar-

Will gynae still go ahead with the laparoscopy if I’ll be on my period when it is scheduled? Feels like I am always on my period and really worried it will just get pushed if they can’t schedule it around the bleeding.

The fertility appointment with NHS is a few weeks before the laparoscopy is scheduled privately. Will telling the fertility clinic about this bump me down to the bottom of the list for IVF? Worried they will just tell me to come back when it’s sorted.

Any advice generally for coping with a new endo diagnosis when you’re trying to conceive? Feeling completely lost and alone.

Sorry this ended up being such a long one!

Just come across this - I was you several years ago but my endo is in my uterus as well. I had a laparoscopy before finding this out. I think they're ok with bleeding, they must be as you bleed / spot afterwards.

Yep, endometriosis pain is awful, mine was worse than childbirth.

Told no chance of natural conception and referral to fertility clinic however as I was 34 once I got to the top of the list I was told it was too late as they wouldn't be able to fund me due to my age.

Anyway I'd recommend you start saving for private treatment as the odds are, unless your in an area that funds after 35 it'd probably be your best bet.

We did and now have an 8 year old!

Good luck 🙂

Sorry this is happening, it all sucks.

NHS fertility investigations are incredibly slow, once you’ve had the endo dealt with I’d pay for private IVF asap if you can. I don’t know if that affects eligibility for NHS IVF (but also I don’t see how the NHS would know about private treatment unless you told them). So you can maybe pursue private and NHS investigations simultaneously.

Just make sure you don’t take clomid while your ovaries are stuck, as I did that when I didn’t know my ovaries were stuck to my womb with adhesions. Clomid makes your ovaries swell up from walnut size to lemon size and if your ovaries are stuck in scar tissue while they swell up, that is very painful. Very.

Anyway. I was told the laparoscopy guys do not care if you’re on your period, they are used to seeing blood, but if it worries you ask your gynae’s receptionist to find out. As you have private insurance you can email and ask questions and phone them etc, it’s v different to NHS, you’re a customer not a supplicant.

Be aware that ovarian adhesions usually reform. The surgeon can free your ovaries and perhaps they will then function normally but, as a scarred ovary has lost its slippery coating, it probably will reattach to the womb. I think I read somewhere that they reattach 60% of the time. My surgeon released my ovaries from a very painful position and detangled the tubes but of course they ended up stuck to the womb again. But as they were now in a painless position I decided not to repeat the surgery (particularly as every new surgery creates new scar tissue).

If your ovaries are stuck (or re stuck) and you do IVF, the ovaries won’t respond as well as for other women. I only produced one egg on IVF, which died quickly. If I could do it all again I would buy donor eggs, get them fertilised by husband and freeze embryos then have the implantation done soon after the laparoscopy (so that the ovaries aren’t too stuck when the womb begins to enlarge).

My hope for you is that you do a lot of research on ovarian adhesions and fertility and endometriosis before you go down the IVF road, so you don’t waste a lot of time and money on treatments that might not suit you. My doctor seemed determined to make my ovaries produce viable eggs despite it swiftly becoming obvious to me that my ovaries just couldn’t function, presumably because of all the scarring. I wish I’d gone straight to donor eggs but I know that is a big step.

My other bit of random advice is that IVF doctors and clinics have very different success rates, if you go down that road be sure you pick a great clinic/doctor which might not be the nearest one.

The good news is that laparoscopy is a fantasic surgery, I felt so much better in my womb area as soon as I woke up. And the sleep you getnon the anaesthetic is amazing.

Hope the surgery goes well for you and that your journey is successful.

Guys you have been so helpful, I feel like I’ve been in my own bubble and hearing from others that have been through it means the world. I’ve now had the NHS fertility appointment and told them about the laparoscopy, they have booked a follow up for after the surgery so they’ll have a better idea of my options- but they have said they won’t be able to apply for IVF funding which was a bit of a gut punch. I’ve got my BMI below 30 for it but had no idea that it has to be maintained for 6 months. The consultant asked when exactly I reached my goal weight and I didn’t really know precisely and had no idea the gravity of the question so offhandedly just said a couple of months. This means the consultant has time stamped that and the 6 months maintaining the correct weight is 10 days after my 35th birthday…taking me out of the running for NHS help.

Coming to terms with how savage the NHS funding is for IVF, probably very late and cursing my naivety!

NHS have said to ask Bupa if they can take a peak at my fallopian tubes while they are doing the laparoscopy to save a second very similar procedure to check they are not blocked- then I guess we’ll go from there with anything else NHS can offer and I’ll start looking into IVF privately. It’s such a rollercoaster with obstacle after obstacle that makes me think maybe it just doesn’t work out for some people, but I really appreciate everyone’s help and advice xx