Sheffield endometriosis centre experiences

[Afrohair]

Hi I’ve been told I’ll be referred to bsge centre in Sheffield for Endometriosis I’m worried as I’ve just seen the word ablation they won’t refer me to the consultant I want as they said it’s to far and said I can look privately I’m worried they will just burn it out please private message me with names of people who have seen you due to rules

[luthien]

Could you call up the Sheffield center secretary? And ask if they have any consultants whom perform excision? Sometimes ablation is used but actually when you see the specialist they will do excision.

I'm not sure about consultant locations; I think there is a distance from your home location that you can be seen under so perhaps the one you want is out of the "catchment area"? If there is a radius then to see the one you want yes you may need to go private but then you could after that be put on their NHS list so you don't actually pay much. Perhaps call the secretary of the consultant you want to see and talk to them about distance etc? that consultant may do the odd consultation at different clinics. Mine works the whole of Gloucestershire, set locations on rotation.

[Afrohair in reply to luthien]

I’m in Doncaster and the consultant I wanted is Manchester thanks for your help I will enquire if I can find the secretary online if I was referred would that mean I was on nhs waiting list but have to pay

[luthien in reply to Afrohair]

You'd pay for their private consultation about £200 ish, and any additional tests - I had blood tests on mine but my consultant just said go to your gp or normal blood test center and have it done there as they're all the same, which makes sense so that bit didn't cost me.

If you're then put on their normal NHS waiting list you won't need to pay for the operation; the pros are you know you'll be operated on by that specialist so their standard will be the same, the negative is that you'll be subject to their NHS waiting times which can be up to 8 months, hopefully it's not that long.

Do you have any friends / family in Manchester? Sometimes that can help because you can say you'll be staying there after your operation.

[Afrohair in reply to luthien]

My partner has friends their I obviously won’t stay there but I could say that I’ve heard people waiting a year for this specialist as he has good reviews will the private specialist request the referral to your g.p

[Christin_a]

Hello there's 2 types of ablation

The one you're thinking of to remove endo. But there is also utrine ablation which is to remove the lining of the womb. Check what they are talking about and if worried call the secretary and ask them.

[Afrohair in reply to Christin_a]

It says it’s for heavy periods?

[Christin_a in reply to Afrohair]

Yes so that would be utrine ablation. It can effect fertility so it's something you need to discuss with your Dr in depth before deciding if you want it or not. It's always best to make them aware if you are wanting to have children etc so that they know what are the best options to help you but also keep your fertility.

[Afrohair in reply to Christin_a]

I did say I was trying but I don’t think my general gynaecologist was really listening or even knew much as he put me on the pill when I’m trying said it should calm me for 3 month and I just looked online on who he is referring to and it talks of ablation I can’t have that done it does say laparoscopic surgery on a separate billet point so not sure I’ve emailed the hospital to find out

[luthien in reply to Christin_a]

ah forgot there's two types, i forgot the uterine "endometrial" one, whoops :S would that be best to be done by a particular specialist too though? not sure which one; possibly one that specialises / interest in heavy periods?

[Afrohair in reply to luthien]

I’m just worried about it affecting having kids I heard someone say you can’t have kids if you have it aswell

[Lindle]

Who has said you are being referred to the centre?

[Afrohair in reply to Lindle]

My general gyn said that

[Lindle in reply to Afrohair]

Oh good, so he has now agreed? In your previous post you said he was referring you for scans and that you can feel growths in your bum and area near your vagina. I assume he did a thorough clinical exam (fingers) and felt them too. If that is the case he should be referring you straight to the centre to do the scans as they have expert radiographers there.

[Afrohair in reply to Lindle]

My general gyn did an exam and swabs I can feel growths he said I will have recto vaginal endo he didn’t feel anything really just told me my uterus is introverted but he hasent done the referral yet he said I have to have an mri first ??

[Afrohair in reply to Afrohair]

The mri will be at hospital

[Lindle in reply to Afrohair]

It would usually be a retroverted uterus that might point to RV endo, but there needs to be 'suspicion' of severe endo (which this is classed as) to be accepted for treatment at the centres. So as it does seem now that your gynae suspects deep endo it will be down to him to make a case for you to be accepted. Treatment at centres is a highly specialised service in tertiary care commissioned nationally through NHS England and not locally. The treatment specification is below. I hope you get the referral OK. x

england.nhs.uk/commissionin...

[Afrohair in reply to Lindle]

What’s r v endo does that mean it’s pushing my uterus aside

[Lindle in reply to Afrohair]

The definition is in the link above:

'Recto-vaginal endometriosis is endometriosis which involves the recto-vaginal

septum area (recto-vaginal septum, vagina, utero-sacral ligaments, rectum). There are many

classification systems for endometriosis but none are universally accepted. The definition used here would accord with grade 3 and 4 disease used in the revised American fertility Score'

The typical presentation is where the pouch of Douglas (cul de sac) is 'obliterated' with dense fibrosis from the long-standing inflammatory process of deep endo over usually many years. The POD is a pouch in the pelvic lining (peritoneum) between the back of the cervix and front of the rectum. With age this causes tightness of the scar tissue which then typically pulls the uterus back making it retroverted. Symptoms of this are often lower back pain, sometimes referred down a leg (usually the left), pain with deep sex, with internal exams, difficulty inserting a coil, bowel problems, difficulty sitting/walking...

RV endo is in the form of fibrotic 'nodules' and these can often be felt on clinical exam (fingers up bum and vagina at the same time) on the uterosacral ligaments that run along the POD or in the area below (rectovaginal septum). When nodules are felt this automatically fulfils the referral criteria for treatment at a centre. A scan (transvaginal ultrasound or MRI) is then done to 'map' the pelvis to give an idea of how deeply and where the endo has infiltrated to help in surgery.

Hopefully you now have a plan in place. x

[Afrohair in reply to Lindle]

No fingers up bum didn’t do that

[Afrohair in reply to Lindle]

Think I’d he won’t refer me till he has the mri I have to wait for all these scans done in general hospital

[Lindle in reply to Afrohair]

If the scans show deep endo then you should be automatically referred to the centre. However, if the scan doesn't show anything it doesn't rule it out. But cross that bridge if you need to at the time.

[Afrohair in reply to Lindle]

Thanks for your support x

[Lindle in reply to Afrohair]

If you do need more guidance I have my own UK group based on all current guidelines and standards. You might already be a member but if not pm me if you would like to join.

[Afrohair in reply to Lindle]

Thankyou I’m not on social media though x

[LittleBlue125]

I had excision and ablation there with Mr baxter 8 weeks ago. I had a positive experience - also had the surgery quicker than friends waiting at other centres. I made sure it was Mr Baxter operating as he is the lead surgeon and specialist at the bsge centre. He explained that they excise deep infiltrating endo and ablate the superficial stuff as excision causes more scarring. He has far more expertise than me so I have trusted him - I think sometimes all the worry and second guessing just stresses me out more and I need to have faith and go with it. I've also read articles online (endorevisited Facebook group is amazing) saying that it's the surgeon rather than the technique that makes a difference and that both techniques are effective in right hands. pain is already much better and I'm only 8 weeks out.

[Afrohair in reply to LittleBlue125]

Ok does ablation stop you having kids

[Greencupcake in reply to Afrohair]

Hi. Ablation of endo means burning off the endo to remove it. It doesn’t stop you having kids (I’m Currently pregnant and I’ve had ablation of endo before)

I believe uterine ablation (burning off womb lining) can affect fertility but would be unlikely they will offer this if you are planning to have a baby.

The centre is specialist and it’s likely the website just lists all treatments they offer. Until you’ve had your appointment you won’t know what they are offering you

Hope this helps. X

[Afrohair in reply to Greencupcake]

Thankyou and congratulations on your pregnancy

[Afrohair in reply to LittleBlue125]

I’m glad you had a good experience and feel better I’m most worried about my fertility aswell wouldn’t want more issues down the line I have it on my rectum to can he deal with that as I heard you need two surgeon if on bowl

[Marie2377 in reply to Afrohair]

Lots of confusion for you which isn’t good. I paid £200 to talk to a private consultant about my options and he explained everything to me and was amazing. No one should be left confused or unable to say what exactly is going on. You should know exactly what’s happening at every point of your journey. I also paid for private scans initially so I was powered with information about myself because sorry to say my experience with some gynaecologists over the years has been horrendous. Keep all the information you get in a folder if you do some initially things privately and then you can always show them to whoever you see.

So important that you know exactly what’s going on and what’s been decided. We should be able to say exactly what’s been diagnosed and what plans have been made moving forward. No one should be left confused. Once you know everything you can make plans for your future. Because there is confusion around your diagnosis perhaps also regarding your more recent post is why your partner isn’t jumping to ivf. 35 isn’t old btw it’s still very possible to have children but I understand that time is a very real factor. Miscarriages unfortunately are common but many women who have miscarried go on to have children. Most important for you and your partner is after you are diagnosed that you discuss all your options and don’t be afraid to have a list of questions and to ask consultants questions especially initially so you are clear. The womb always needs love and care after a miscarriage so look after yourself and love and heal your womb. I found in my case stress came from getting poor information. Once I found my amazing consultant and I also have a miscarriage consultant (there’s only a few of them in the country) my partner also was calmer and less stressed. Good luck with everything, I am based in Surrey and London but if you want names let me know. it shouldn’t be so hard but getting diagnosed and understanding everything is a journey for most women. A final word good consultants want to save your fertility especially if you want to have kids, if they start talking about hysterectomies find yourself someone else’s who cares about what you want. X

[Afrohair in reply to Marie2377]

I will! Iike I said I saw who I wanted to do surgery because I knew he would save my fertility but got denied that nhs doctor cause it’s too far from us but I may still consult with him ,my posts may be a bit confusing because I’m so overwhelmed I just keep thinking of the bad and what ifs that’s why I wanted to start understanding ivf I know it’s possible it might come to that but I’m so scared of all these ladies have endo then ectopic pregnancy that I thought I might aswell by pass everything it’s so upsetting to read and I keep thinking something bad is going to happen so sorry if my posts sound a bit out of touch I’m just baffled with it all and this issue is taking over my life a lot at the minute this year hasent been great for me as I said previously I just got engaged my partner went travelling to find me not being able to walk or move out of bed when I returned the pain continued I knew nothing about endo it started getting better slightly and I found out I was pregnant I lost the baby recently in September after 13 week then the pain is back only worse I’ve lost my job as a supervisor through it lost my baby and now I feel like I will loose him because of all my troubles although he says not I’m supposed to be getting married in June and I haven’t even planned my wedding day

[princesszelda in reply to Afrohair]

Hi, sorry to butt in, just wondered how you went about paying for a private appointment? I'm interested but don't know how to do it or where to start! Thanks

[Bubblepoppy]

My friend had the ablation and it worked out well for her endo, she hasn't had any pain since, I'm also waiting on a lap and ablation just the luck of the draw I suppose hope you are having a pain free day x

[Afrohair in reply to Bubblepoppy]

That’s good she had success guess everyone is different