Leeway on BMI for ivf? Please help

[Jamiemc23]

After trying to conceive for over a year with no luck I've just found out that I've got polycystic ovary syndrome and I've been referred to a fertility clinic.
I know that there are strict guidelines for a healthy BMI in order to get IVF. My problem is I will never EVER be able to achieve this. I've got a condition called lipoedema which is a painfull fatty condition in legs/hips/bum and no matter how much diet and I do I cannot loose weight from these areas.
There's nothing on my upper half but these areas make my BMI 49.
I'm hoping they take.this into onsideration and help me out, I'm so nervous for the appointment in case they dismiss me over something I have no control over.
Has anybody ever been given any leeway on BMI because of a condition?

Hiya! Don’t have an answer but have you thought to call or email the fertility clinic that you’ve been referred to? Might put your mind at rest as this seems quite specific and might depend on individual hospital or CCG policies

Also, if PCOS is your only diagnosis in regards to pregnancy issues, are you sure that they’re going to refer you for ivf and not start first with something a little less invasive and intense, such as ovulation induction? If so, the eligibility is a bit less stringent I think

Depending on the clinic they may give you a BMI limit of 35 or, like what happened to me, under 25. Being morbidly obese with PCOS and going through IVF can cause a whole host of problems even if you do get pregnant. Are you being treated for the lipodemia? If not I suggest you get traction with that.

Thank you for your replys!
Im in a same sex relationship. We have been trying using a donor with insemination method. My gynocologist has suggested that we stop doing what we are doing and go for ivf.
It's unfortunate that my condition cannot be treated, there's no cure, they can only make me more comfortable using compression garments

OK! Then as it’s defo ivf, I would email the fertility clinic definitely! It beats worrying about it until your appointment. You could also check your ccg’s website in case they mention possible exemptions. Hopefully someone on here who has the same condition and has been in the same predicament as you will comment soon but from my limited experience of ivf so far (1 cycle) hospitals and ccgs greatly vary in what they offer (number of cycles, treatment plants eligibility etc) and so one persons experience may not be indicative of what you can expect. But like I said, I’m a relative newbie to ivf.

Can you not ask whoever made the referral? They must have some idea of eligibility. When my doctor made my referral, he was very clear that I would need to lose some weight in time for the first appointment in order to get my bmi down to be eligible. Good luck with it all though!

@Jamiemc23
I am unclear from your post whether you’re being referred on the NHS or privately and therefore don’t know the answer to this.

If you are being treated privately they may use their discretion and treat you outside their usual criteria.

If NHS, the clinic may have to submit an IFR for you to be allowed IVF outside their criteria. But this is the sort of thing the IFR is for as you have a rare condition and so your situation is rare and exceptional.

You may have a battle but it’s not obesity it’s a chronic condition ie a disability. In English law, you should not be discriminated against because of disability. Even if CCGs are having short of money.

Obesity related pregnancy problems may not impact on you, as it’s mainly your legs, I imagine. That might not stop people applying rules without consideration of individual care needs.

I think I’d ask my GP or consultant to write to the CCG and clinic and explain that the BMI is not obesity related and cannot be addressed through lettuce or bariatric surgery.

Avamercy. I've lost almost 3 stone in 9 weeks and I plan on loosing another stone before my appoiintment at end of December. I did speak to the lady who made refferal and she hadnt had anybody ony situation before so she was clueless. thank you for the luck I need it!
EarlgreyT. I've been referred for NHS treatment. Thank you for that info! So helpful. I'll put that to them.
Cherrypavlova.ill get my nurse to do that for me thank you so much. I feel a little better now that I have some knowledge. Thank you ladies xxx

I have known a little leeway for private patients being treated up to 36/37 (cut offs usually 35) but with NHS there doesn't tend to be much flexibility over 30, the issue is any higher and they see a substandard response to medication, complications with sedation with higher BMI and also as mentioned pregnancy complications, I know a few people who needed sedation for things but clinics wouldn't sedate them with a BMI of over 35, you may however have more chance with an NHS clinic if attached to a hospital as they have more things available if things don't go to plan, I also know of a few who's BMI was 38-39 who were offered unmedicated IUI rather than the medicated IVF they wanted.

You may also need a letter of support from an obstetrician dealing in high risk pregnancies happy to look after you throughout pregnancy too for them to consider anything, I do hope you manage to get sorted

A bmi of 46 is bariatric or morbidly obese and pregnancy at this weight is not healthy for you nor your baby. You say you’ve lost 3 stones via diet and plan to lose more, so it would seem like a reasonable idea would be to continue with the dieting to lose weight where you can- allowing for the fat due to your condition. I believe swimming is good for the condition too?
It sounds really hard all round but your health and your babys health have to be considered seriously before you embark on ivf. With so little known about the condition you may not even be suitable for the hormones of ivf as isn’t there a hormonal link so your condition could worsen via ivf or pregnancy?
Could your partner not consider pregnancy instead?

That’s rubbish about the PCOS diagnosis and I can imagine that you’re feeling stressed out about meeting criteria for IVF.
Has your partner considered carrying? It might not have been your original plan but with a BMI above 45 even if you successfully conceive with IVF the chance of miscarriage is higher etc and you only get so many rounds on the NHS.
I’d recommend your partner carrying if she has a lower BMI and is healthier?

I am undergoing fertility treatment and they gave me a goal of 34, I managed to get to 35 and they let me start treatment. I think if you can show you are trying then it will be fine.

In the nicest way, I would be very surprised if you were able to have IVF with a BMI of 49. The NHS won't do it. Privately I'm not sure, but it's doubtful. Because the larger you are, the higher the risks are, to you more so than baby. If you need surgery at that BMI (like a CS) then it can be very very complex.

I have PCOS too, I'm sympathetic. I had two naturally conceived pregnancies one at an 'overweight' BMI and one at a just 'obese' BMI. I was lucky not to have complications however the risks were explained to me and they were quite scary. I also had to be seen under a consultant as a high risk pregnancy because of my weight second time around.

I understand it feels impossible to you, but as you have already done amazingly well losing multiple stones, can you carry on and do your best to lose as much as possible.

I hope things work out for you. They don't say no because they don't want to. They say no because it's dangerous for you.

Can you get a letter from your consultant explaining your condition clearly in black and white. The letter would need to categorically state that a BMI of under 30 would not be medically possible.