Update and experience on gnrh

[Afrohair]

So saw private consultation today and told it looks like superficial endo and a nodule on pertinatol?area behind uterus and pelvic Endometriosis. told that a lap would cost 6,600 and they no longer do payment plan apparently a lot of hospitals are stopping it now so I’m buggered apparently it’s due to people not paying up so thanks to those ,people like me can’t have surgery also I wasn’t expecting that kind of price so have not had a choice but to go back to nhs consultant will write a letter to my g.p on his finding and I should be able to have diagnostic and treatment by a specialist but waiting list 9 month he’s told me to have injection before lap to stop period I’m thinking this is gnrh ?has anyone got experience on this he said it suspends your ovaries from producing hormones

[luthien]

Ah no

Do you mean peritoneal.

Yeah costs can be high if the surgery involves an overnight stay / more surgeons / takes longer.

It's annoying that they're stopping payment plans.

Can you ask the specialist if you can still see him / her on the NHS? that means you'll still have them operate but not pay, obviously it'll be NHS waiting times.

Do you have a family member / partner whom works? usually they can add family onto their work medical insurance if they have it. Or perhaps look at taking your own out like BUPA (expensive) I think there are other's out there. It means the insurance company pays the hospital and you have an agreement with the insurance company by paying a set amount per month.

I've not had the injection but I think it sounds like a chemical menopause type thing, so stops oestrogen, and ovaries, it's shown to help symptoms of endo. It's not a bad idea especially if you have to wait 9 months.

xx

[Afrohair in reply to luthien]

I’ve tried to see if my partner has it but he Dosent have insurance by looks of it and I won’t get taken on anymore cause now I’m seen to have a pre existing condition . I’m going to try ask my gp for the referral he is writing a letter to her so hopefully I’ll get somewhere .yes that’s the area he felt a nodule on exam I think I’m going to have injection till surgery.wasnt expecting that price he said if it was worse it would be 11,100 i was shocked .it all boiled down to if I lent the money it would be someones life savings. we worked out where we could get the money from but couldn’t come up with that much straight out like that and I didn’t want to risk that much in case endo came back and I couldn’t pay the money back as I’ve heard superficial grows fast I’ve just had to go down nhs route x

[Hidden]

Oh hun that is terrible. It’s awful coming away from appts feeling disappointed ☹️

That’s a lot of money for most people to be able to find.

It sounds positive he can recommend a referral ( I was recommended a referral from a general gynaecologist to a fertility clinic & my GP happily complied)

I was told to have a 30-40 week wait list for surgery ( where my BSGE centre was) but due to awful symptoms of endometriosis my GP wrote to the specialist & I got offered a date a few weeks later ( only waited 8 weeks!) so you could ask your GP to write a letter for a urgent surgery that gets you seen earlier!

I didn’t use any hormone treatment as was TTC ( which was successful after this surgery)

Maybe this is will work out better for you good luck xxx

[Afrohair in reply to Hidden]

Hi jess thanks for your response I’m also trying to conceive the thing I was worried about is if endo has effected my fallopian tubes as I’m dead scared of ectopic he said he wouldn’t know till he goes in so I might have to wait till after surgery to try again.he also said that I could keep ttc but I’m so scared without knowing cause I said I can feel pulling and stretching on my vaginal wall but he said it Dosent necessarily mean their affected and bleeding from bowl Dosent mean I have recto vaginal endo. I just have a lesion next to it.I might tell my g.p how I’m struggling and ttc then she might refer me quicker if I take my partner she might recognise my urgency.the specialist told me the pill isn’t for me it’s only making endo worse it hasn't suppressed it like it does for some people .i was thinking I should just keep ringing for cancellations if they offer me surgery I’m already off work have been since miscarriage in September he also said I might have Adenomyosis as it can cause miscarriage. x

[Lindle]

Note that an endometriosis nodule by definition is not superficial but DIE.

[Afrohair in reply to Lindle]

What’s die?

[luthien in reply to Afrohair]

deep infiltrating endometriosis. it means it's not superficial (on the surface).

[Purplewitch18]

Hi hun, i cant comment on gnrh, but dont know if you remember me saying that my endo is superficial. I was advised further surgery is pointless because it grows back so quickly, and having the lap didnt help with my fertillity either. If you really want it done i would go the nhs route which should be quicker now as the private consultant will write to your dr. You can ask to be on the calcellation list too xx

[Afrohair in reply to Purplewitch18]

Thanks Hun yes it seems some of it is superficial minus the nodule

[Clarice123]

There are surgeons in the NHS who are endo specialists, but the best are members of BSGE.

Like you I paid for my daughter to see her specialist privately. When I explained we had no insurance he informed us that he also did NHS contracts at the BMI hospital.

He wrote to her GP and transferred her over. She only waited for a few weeks before her laparoscopy, he is amazing.

Have a look for a BSGE accredited specialist near to you. If you can travel to Sheffield see Mr Baxter. You could ask your Dr to refer you to him under the e-book system. This is where you can choose your specialist and location. You can go anywhere in England, you really need to see an endo specialist.

When I had endo many moons ago I didn’t have this information, or did they exist?? I really don’t know. Anyway I’ve really battled away for my daughter as our local hospital was useless and her GPs. If you’ve had endo yourself you recognise the signs.

My daughters case is very complicated, but Mr Baxter won’t give in. He even brings colleagues on board for second opinions, which is very reassuring.

It’s really difficult to get your head around all the information at first, it’s a massive learning curve. Don’t give up though, you’ll get there.

Also private insurance won’t cover any pre existing illnesses, I know from experience, so don’t waste your money as it’s very expensive.

I wish you luck, xx

[Afrohair in reply to Clarice123]

Hiya love I saw a specialist and he’s bsge

[Afrohair in reply to Clarice123]

Also nhs bmi no longer do payment options

[lizzyxx]

I had the gnrh injections for 3 months and it really helped my symptoms, didn’t have a period for 6 months which was great x

[Afrohair in reply to lizzyxx]

Thankyou do you know if it slowed the growth x

[lizzyxx in reply to Afrohair]

I’m not sure about that yet, had excision surgery in 2018 and I’m booked in for another lap so will know then. It definitely helped with my pain though so was worth it either way x

[Afrohair in reply to lizzyxx]

thankyou x

[Jonesy84]

I have recently been referred for IVF as I have a number of endometriomas. At first I thought they would operate and remove them but as my egg reserve is low it’s not something they want to do so that’s when they mentioned these injections that puts your body into the menopause. The doctor explained that by doing this it helps to shrink the cysts as I believe it’s like my bodies hormones that’s “feeding it” so by shutting this off for 3-6 months it should reduce the size. I am just waiting for them to decide if they want me to have the injections or just go straight into IVF. Hope you manage to get sorted soon x

[Afrohair in reply to Jonesy84]

I’s it prostap they are offering also ttc

[Afrohair in reply to Afrohair]

I’m going to ask for a referral for a lap by a specialist it was the specialist I saw privately advised I go on it and has recommended it to my g.p till I get seen

[Jonesy84 in reply to Afrohair]

Ah sorry not sure as yet as that’s hopefully what we are going to discuss at the next app and weather they will actually bother or go straight to IVF

[Roro1]

Hiya, I asked my GP to refer me to NHS doctor who I was planning to see privately. From referral to operation, it took me 4 months. Had my lap beginning of Dec. The consultant advised that I should be on gnrh he prescribed Triptorelin for 6 months he said the only way he could operate is if my periods were stopped and ovulation frozen so I’ve been on medical menopause. The lap was scheduled after 3 injections and I had 3 more after so as to enable healing and no periods. I have also been referred to fertility as an TTC, first appointment end this month. Not sure if that answers your question on gnrh.

[Afrohair in reply to Roro1]

Do you know which injection I was told prostap

[Roro1 in reply to Afrohair]

I was put on Triptorelin

[Fooofs91]

Hi my love!!! I also have superficial endometriosis on my peritoneum believe it or not my pain is everyday and excruciating regardless of the type of endo I have . My accredited surgeon is really empathetic I saw her recently for a consultation privately Becuase the NHS waiting was so long . She advised me very honestly . She told me that honestly with superficial endometriosis it’s very best to focus on treatments rather than more surgery . Surgery itself can make endometriosis far worse by creating more scar tissue leading to more pain and also endometriosis tends to grow on the new scar lesions too . She said in my case (superficial endo ) should be treated rather than excised it is easier to treat and also less long term damage from surgery . I am 100% pro surgery btw for pain relief but just sharing some advice with you from what I have been told . I would try the treatments first you may get honest relief . I haven’t been put on injections but I was told 1 or 2 injections to stop the endo growing and then kyleena to slow down the growths is ideal for superficial endo . Xxxxx hope this helps xxz

[Afrohair in reply to Fooofs91]

Hi thanks for your reply I posted this a while ago I am now pregnant thankfully but didn’t have this information to hand so I’m glad you commented on my post I decided after the pregnancy to go down the natural route and try the coil as I’ve already had lots of surgery on my tummy area thanks so much for commenting

[Fooofs91 in reply to Afrohair]

Congratulations on your pregnancy !!! I am incredibly happy for you . You give us all hope and happiness 😘😘😘 kyleena coil is actually exactly like Mirena but smaller I think it releases progestin over the same period of time 5 years but is ideal as it is smaller xxxx

[Afrohair in reply to Fooofs91]

Also what’s Kyleena ?