Endometriosis UK
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Private consultation?

Hi, I have a suspected endometriosis. I was supposed to have a MRI scan last summer but didn’t because I feel pregnant. Unfortunately I had a misc 3 months later and all my endo-type pains came back. I called the hospital to ask for the scan but they told me to have a consultation first as they need to cut down on the number of scans (!!).

As I’ve been trying to get pregnant for 2 years now, I start thinking it could be all because of endo (even though the doc said endo wouldn’t cause infertility).

To get my consultation appointment could take another couple of months, so I was wondering whether to go and see a private consultat? Has anyone done that while waiting for NHS app? Is it worth it? I imagine they would say to do a lap but for that I’d have to go back to NHS (as I don’t have £4k to pay for it privately).

Any advice would be hugely appreciated!

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Have you tried looking into fertility clinics? They can look at you and your partner (yes they can be the cause too), and will take into account your endo. As they are specialists they will know what to look for.

Privately is expensive, I get my insurance through work, but I can still see the invoices. It varies from specialist to specialist. It is about the price you've mentioned, but that was removal of endo too.

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Hi Farahziya! I haven’t looked into fertility clinics yet because I’ve been told my my GP that they can refer me to one after we’ve been ttc for 2 years BUT because I did manage to get pregnant (regardless the miscarriage!) I’ve been told that the 2 year wait starts AGAIN! How unfair is that?!?! (If I was over 35 the wait would be 1 year).

Has anyone had that? I wonder whether it’s the thing in Hertfordshire... 😢

Again, I did think of going the a private fertility clinic but it would be so expensive...

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That is a thing unfortunately, it's a rule. That's why I've started to record my cycles on the naturalcycles app as it's certified, it can be used to prevent or plan and it is recognised by gps and fertility clinics, which is good.

Private would be expensive for fertility too but then they're meant to be more careing, and comfortable. I think I'd prefer private for that.

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Thank you, I didn’t know that naturalcycles app is certified and recognised by GPs! I use FertilityFriend for planning but will definitely look at Naturalcycles!

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It's the way it logs, tracks and calculates that is certified, check out their webpage. They advertise as a fertility tracker and preventing pregnancy, but they do have a section on their website for planning, as they understand women will and do use it for that, so there's a bit on success stories - better than clearblue as it provides a wider window of fertile days and more accurately uses basal temperature combined with LH tests to calculate and predict your cycle. It has a simple switch in the app, check with your GP or fertility clinic if they know of it / heard of it and are okay with it. Some will still refuse it. My GP has heard of it and is perfectly happy with it to be used for either planning or preventing.

Obviously there's always going to be some pick doctors out there that don't believe anything we do for ourselves, we've all experienced them at some point!

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Good point, I should check it first with my GP! I’ve heard that naturalcycles app works on subscriptions so I wouldn’t like to pay for it if docs will ignore it.

I’ve been actually tracking my BBT for over 3 months and apparently my temp shows I could have endo and my second half of the cycle temp isn’t as it should be do not sure if I even ovulate :(

There are quite a few things I worry about so I really need to go and see a gynaecologist!

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I've paid for it yearly as for it beats buying any other prediction tests which would potentially cost more over the year, and I don't need to do any calculations! It personalises to you and takes four months to get used to your cycles, so will highlight whats different for you rather than what's different to norm, which I find is good as mine isn't normal either like yours!

Have you used ovulation tests in combination with your basal body temp? both together could show your second half of your cycle being different for a reason; my temp peak is sooo small after ovulation, plus my LH test before I can only detect for a 4 hour slot; I'd miss it if the app hadn't spotted it.

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Yes, I also use the clear blue ovulation tests. The test shows the whole of my second half of the cycle as ‘possibly fertile’ which is weird.

I get very small temp peak after ovulation too :/ and then the temp fluctuates, doesn’t stay high all the time :/

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your temp only needs to be higher than the previous part of your cycle for two days for natural cycles to record it and register it, which is great :) There is a comparison on the naturalcycles site between it and clearblue; which may be of interest, it doesn't say clearblue shouldn't be used, just that for odd cycles it won't work, that's where something that tailors itself to you works better. there may be other ones out there too!

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I’m so sorry for your loss- I had one early miscarriage last summer and it was awful.

It’s rubbish to say all endo doesn’t cause infertility- that dr sounds lacking on endo knowledge 🙄

Like you my endometriosis has caused fertility issues- took us nearly 6 years of ttc to get diagnosis. Mine was in POD.

My endo symptoms are also back since my loss- I’m lucky I’m under a very good fertility doctor and he referred me to a general gynaecologist after a scan he ordered revealed my uterus lining wasn’t in uniform. I’m having another laparoscopy and hysteroscopy with biopsy and removal of endometriosis if found again.

Are you under a fertility specialist? They should be able to arrange another laparoscopy- or refer you to a general gynaecologist for one If you’re not then as you’ve been ttc over 2 years you should be refered to a fertility clinic.

I have heard they’re cutting down MRI scans - my colleague who has crippling back pain was refused one and has to go through so many channels before she can get one. She’s a hard working single mum it’s shite 😡

Not all endo will show on mri. I think having a laparoscopy is much more reliable.

I can’t answer the question on private consultants as I haven’t had to go down that path- but that’s only because my fertility doctor has been so supportive. I’m sure other ladies can advise on that better.

If you’re in lots pain go see your Gp and get a referral. The GP should be able to manage symptoms- mine has put me on co-codamol and tramadol 😊 I also found out my iron level is very low and I’m on 3 ferrous sulphate a day- if you’re bleeding heavily get your iron looked at 😊

Good luck with everything xoxo

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Hi Jess!

I’m really sorry for your loss :( Trying to conceive for years it’s truly an emotionally and physically difficult time.

Because I’ve managed to get pregnant last year (even though had a miscarriage), the 2 year waiting time starts again (that’s what my GP told me) - which is terrible and I was in tears when she told me that...

Was is the same for you?

So I won’t be referred to a fertility clinic until we move been trying for 2 years (which would make almost 4 years all together!) - if I was over 35 then the waiting time is 1 year of ttc. I really can’t wait that long if there is an issue but going to see someone private would be very expensive...

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No it wasn’t- I was already under a fertility doctor when I conceived. My fertility doctor did my laparoscopy then I conceived- first time! Shows it was endo. My fertility doctor was wary about recording the pregnancy as it can affect funding for IVF - but as I can’t access funding for IVF ( I have a child from a previous relationship) he recorded it.

I think then your best bet is to get a referral to a general gynaecologist for the symptoms- this should not get ignored. I ended up getting refered a few years ago to one - and thanks to the gynaecologist I was referred to my fertility doctor 🙌🏻 A general gynaecologist can do a laparoscopy- if it ends up too severe /complicated they can then refer to an endo specialist.

Everyone should be refered for initial investigations- I didn’t realise that would affect things- that’s awful- I know it affects IVF. Honestly who comes up with such rules 😡😡😡 like having fertility struggles isht enough- you don’t need to fight medics too 🙄

You could always try to appeal against the decision but if might be quicker and easier to go for a private consultation. Go to an nhs one that does both- hopefully they can put you on their nhs books 😘 do some research and find one who specialises in endo or has an interest in it.

You are having pain/ symptoms since a miscarriage - this cannot be ignored. Keep going back till you find a GP that’ll listen- I changed my GP because he dismissed my endo pain ( which wasn’t formally diagnosed then) 🙄

Good luck xoxo

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Thank you for your advice, it’s really useful!! :)

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endo wouldn't cause infertility? which doctor school did they go to? haha

I saw my consultant privately yesterday whilst also waiting for a NHS referral. I need my surgery plus MRI on the NHS. He is writing to my GP with his findings/recommendations about treatment. I still have a long wait as now need to be referred to a NHS gynae and then they have to send me for an MRI and surgery...sigh...

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Hi! Was your private consultat also an NHS Doctor?

I didn’t realise they can write a recommendation to your GP. Really good to know, thank you! Do you know whether that would change/speed up anything?

I’m quite determined to see someone ASAP so I’m looking for a private consultat, while waiting for my NHS app to see a gynea... They really test our patience, don’t they! ;)

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