Hi there, my name's Amelia. I'm 34 and have a large endometrioma on my left ovary (7 cm). I haven't been oficially diagnosed with the disease, however judging from my symptoms and a large endometrioma it is endometriosis. The pain I'm getting from the endometrioma is getting worse and worse and flares up after certain food or alcohol, I noticed. Basically, my physical and mental well-being is deteriorating.
On top of that, my husband and I have been trying for a baby for almost 2 years now, with no luck so far. I have been referred by my GP to see the specialist, but due to covid I have been put on the waiting list. I am strongly considering going down the private route. Have already contacted the specialist from one of the BSGE clinics, because I can't wait forever for my NHS appointment. My only concern is paying £200 for an initial consultation (tests fees are not included) and so I'm dreading to find out how much would they charge for the private laparoscopy if that's their recommendation afterwards?
Had anyone seen a private specialist and then was referred for an NHS laparoscopy?
Take care all, X
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From what you've mentioned its worth having the private consult as this can happen this month and you will be able to know your options for treatment and costs if you wish to go private, I expect it will be expensive without health cover.
Do as much research on your condition, eat healthy (lots of endo good foods on web), be a healthy BMI weight as much as possible before any op as it will help especially with trying to conceive afterwards or any ivf you may undergo. Good luck.
I am 32 (33 this yr) and we have been trying to get pregnant for 4yrs 5 months and 29days (yes I had to google that 😉) and you may want to grab a cuppa this is probably a long one.
I had a 7hr surgery 4months ago to remove endo that was severely covering my insides. It had stuck together my ovary to my bowel and stuck both of those to the back of my pelvic wall. I had bowel issues which caused all sorts of horrible painful symptoms, I had cysts in both ovaries, a Fallopian tube which was blocked and one we weren’t sure about. I too suffered with flare ups to certain foods especially dairy milk in particular along with caffeine (that was a biggie) and alcohol.
My pain issues effected my work my colleagues knew of my condition but didn’t care, one particular colleague my closest friend at the time got pregnant and had zero empathy or understanding of what I was going through. Needless to say we are no longer friends and have no contact. I got diagnosed with anxiety and depression and had therapy.
I had my first consultation with my specialist on the 1st of Jan 2019 he told me 6-9mnths initially however it got pushed for what they call the winter crisis then by the time we came out of that it was March 2020 and as you know a pandemic hit and it got pushed again. I finally had my surgery in august 2020 it is funnily the highlight for me of 2020. My amazing consultant managed to do my surgery with his team and the colorectal team and fix my insides. I am not at my happy ending quite yet we are still awaiting our positive pregnant test but I am far more hopeful now than I have ever been.
I got very dark we too looked at going private and got a quote of how much it would cost needless to say it was staggeringly between 20k - 25k. I was in agony but it made me appreciate our drs and nurses and made me so grateful for the job and expertise they have.
I had mine via nhs as we did not have access to that kind of money. I know that when I asked a similar question as you we were told no. The NHS like you to follow their pathway as they can then keep tabs on where you are at but it is long and laborious.
As I said I am 4 months post surgery and it is like I have a new lease of life. I do want to point out this is not always the case for everyone but I was very lucky and for me I have no pain the odd cramp that is fleeting when my period arrives but otherwise nothing.
Please know I do not say any of this to put you off anything but just to highlight just how expensive it may be, if you are in a position where you can I say go for it you are investing in your health I wish I could have had it done sooner and cut out the wait times. Please push for your diagnosis and remember that scans and blood tests don’t usually show endo.
Please feel free if you have any questions about anything and lots of luck- you are not alone and there is hope at the end of the tunnel.
Hi, I’m in a very similar position to you. We decided to have a private consultation (£180) with the same consultant I was waiting to see on NHS in Nov 2020. She recommended at the consultation to have the laparoscopy done on the NHS as there was only a 2-3 month wait time (Nov 2020). We decided to go down that route and referral was made by GP. I contacted the hospital just before Christmas and they informed be that I was now on a 40 week wait list and wouldn’t be seen until Aug 2021 and that wasn’t even for the op. I contacted the consultant privately again and she actually advised that they’ve cancelled all non-elective non-cancer gynae procedures in NHS in my area due to Covid and even if she could move me up the list, the op wouldn’t be until March 2021 at the earliest now.
We have now decided to go private and I’m having a diagnostic lap, excision of anything they find and fertility tests on tubes etc on Thursday. It’s costing us £4720 with Nuffield.
Just to also add I had all my bloods done, internal ultrasound, up to date smear etc with my GP before we saw the consultant in Nov. All testing had been going on since July. We therefore didn’t need to have any extra tests done privately as they were able to issue the information with the referral from the GP.
Is your GP following the NICE guidelines when it comes to fertility and also endometriosis? I’ve also pushed for our fertility referral to go through at the same time as again massive waiting list but hoping after the lap, we’ll make use of the 6-month golden window but if we don’t manage to fall pregnant, the ball is already rolling on the fertility side of things. I needed all the tests in place for that referral too.
You’re right to not wait as if you wait and then have to go down the IVF route you may have to pay (depending on where you live) and it is very expensive.
Hello I paid for a private consultation to get access to a specialist as the NHS waiting list where I am was at least 1 year then a further year for surgery. When you are in daily pain you just can’t wait that long. My consultation was £200, I wasn’t even in the room for 10 minutes! I then paid privately £5,500 for a laparoscopy.
Fast forward a year and again I was back at the gp and again it would take about a year to see someone. I paid another £200 for a private consultation and advised to have endometrial ablation. I couldn’t afford to pay the surgery cost again so they put you back on the NHS waiting list.
It certainly makes things quicker and you don’t have to pay for the whole lot, you can have your consultation then ask to be on the NHS list.
If you’re not diagnosed yet (but I’m 100% sure you have endo, if it is an endometrioma that you have) then it might be worth getting health insurance (bupa, axa, etc) as private hospitals like Nuffield accept health insurance payments.
Unfortunately there would be no chance of getting private health cover with a diagnosis of ovarian endo from a scan. Even suspected endo wouldn't be covered.
A private gynaecologist will ultimate tell you the price for private lap as that is what they presume to be the outcome of consultation however during your appointment they can tell you their findings possible examination and write to your g.p with an intention of you speaking to your g.p and asking for a referral endometriosis care pathway is a difficult one but seeing someone privately is a good option my lap was quoted£ 5,500 mild disease but He told me that was cheap and charges up to 12,500 severe disease
If a large endometrioma has been confirmed by a scan then that is a diagnosis. Left sided endometriomas are almost always associated with severe rectovaginal endo that predominantly affects the left side. The left ovary is typically bound by dense fibrosis/adhesions to the pouch of Douglas/cervix and rectum. Whether or not this is all picked up on a scan depends on the expertise of the person doing it - it takes skill to find all the signs of RV endo but in the right hands it is a very accurate way of finding it.
You will need such an expert scan before any surgery is done. Many women see an advanced excision surgeon privately to get the ball rolling or alternatively, depending on where you are in the UK a good route is to pay for an expert scan combined consultation to get RV endo diagnosed and you can then transfer to the NHS list of a centre.
Private costs vary but be aware that whether surgery for severe endo is done privately or on the NHS you must have a multidisciplinary team of two gynaecologists working together with colorectal and urology surgeons as needed. This is expensive and realistically will be at least around the 10K mark. Beware of any any advanced surgeon proposing to do it alone for much less (which is happening) as this is putting you at great risk by bi-passing national safety standards.
Unfortunately whilst women with severe endo do conceive, the statistical chances are very low. However the good news is that chances are significantly improved after thorough expert excision.
I’m sorry to hear ur having a tough time. I paid to have a private consultation with a specialist, best money I’ve spent . First time I’d be listened to and had everything explained to me . He wrote to my gp and advised on referrals that needed to be made and treatment . This has all been followed up . I don’t think I would have got this without seeing a private consultant .
I also struggled to conceive and was told at the time it was unexplained , endo, pcos , adenmyosis was not explored . I now know I have all of these .
It took me 3.5 years but I did conceive naturally . I discussed fertility with the private consultant and their may be options available to u to help with this .This is something u could discuss in ur appointment .
Take care of yourself it can be really difficult managing endo and trying to conceive.
I can’t comment on the private x NHS part of your question as I am living abroad and had to do it all private.
I had a 6 person team conducting my private lap (because of the extension of my endo spread) and it cost the equivalent of 6k.
I would just add a comment I personally wish someone had told me before I did the removal lap: if you have ovarian endo you may want to consider doing an egg retrieval beforehand. I did my surgery with the (apparently) best doctor in my city and even so there are fibrosis/scars that, going on to round 4 of IVF, my clinic tells me could be partly the cause of my low ovarian reserve. The cost would have been much higher for me at the time but I do wish the endo specialist had reinforced the impact any surgery on the ovaries can have on our ovarian reserve.
Thank you all so much for your comments. All very informative and helpful. I will have a discussuion with my husband re what our next step is going to be and I will let you all know what the outcome is. Once again, thank you all lovely ladies, much appreciated!! Xx
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