Running out of treatment options, please ... - Endometriosis UK

Endometriosis UK

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Running out of treatment options, please help me

SatansLeftHoof profile image

Hi all, I’ve been discharged after four days inpatient in hospital for pain management reasons. I’m already diagnosed with endo and treatment wise I’ve had:

3 x laparoscopy - one diagnostic, unable to remove endo as on ureters, x2 excision.

1 x round zoladex (hell)

progesterone only pill (multiple types)

Ovranette

Contraceptive pill (other types which I can’t remember the name of)

Mirena coil x2

I still have pain, pain and bleeding on sex and irregular super painful bleeding (but v light) despite having the mirena and having no periods for 3 or so years. I’ve been told I’m running out of treatment options and honestly I cannot keep doing doing this, it will cost me my job and is already costing me my sanity. On the last laparoscopy they didn’t find anything and said something about invisible endo or other reasons for the pain. Colonoscopy negative, no STDs or infections cervical smear was negative. No ovarian cysts at the moment either. Should I consent to another laparoscopy or look into other treatment options? I’ve tried cupping for the pain and with no results. Is t feasible to undergo a laparotomy for them to have a proper look around? What about total peritoneal excision? I cannot keep doing this, I’m exhausted physically and mentally and it’s edging to towards a breakdown.

Thanks for reading this essay and thanks in advance

5 Replies

Hi,

I am so sorry you are going through all of this. My advice would be to get another opinion as it sounds like you are being messed around a bit. Have you asked for a gynae who specilises in endo. I have seen so many gynaes and I have finally found one who specialises in endo and he has been great. Feels like all my pestering has been worth it (or should say my husbands perserverance!)

I cant comment on a laparotomy as never had one but if you get a good enough surgeon they should be able to do it through laporoscopy.

Hope you get some help and relief and answers soon. All the best xxx

Thank you for replying :) my gynae does specialize in endo, and he’s the oneness who did my previous 2 laparoscopies but the pain always returns and being told you should seriously consider freezing your eggs at 25 is pretty shit. I didn’t know if laparotomy is more thorough as seemingly the last 3 laparoscopies have failed... I have recently moved and am booked to see an endo specialist post this last admission with the thought of discussing another’s laparoscopy. But I have no faith n it and am more than happy to go for a laparotomy if it helps bc I am sick of being in pain!

Thank you! :) have you found your pain has entirely subsided? Xxx

Im so sorry for you it really sounds like you are going through the wars!! I hope you are getting the support you so rightly deserve at least. I used to feel the same as you with laps so much so I told my last gynae to stop treating me as a test subject and said I would handle it myself. I even begged them for a hystorectomy as i have been told im infertile and they said no. I have finally a fab new gynae after i couldnt handle it alone and my OHs insistence!! He has already done a lap and found stage 3 on my bladder. Im having to go private as NHS is just too long to have it excised out. He has listened to me and gone over everything with a fine toothcombe. He knows how much this has affected me and always makes sure i know what is happening and gives me support. I even broke down once saying i bet he thinks im imagining it as per my last gynaes notes and he told me he makes judgements on what he sees not what his colleagues think of me!!!

I doubt it will ever go but just need to get my life back as I had no life, work was getting affected, my sex life was non exsistent due to pain and i was scared leaving the house in case i got pain. My aim now is to have more good days then bad!!

Maybe it is worth writing everything down and going through with your new gynae just express this is affecting your quality of life and keep insisting for help. I know it is hard when you dont feel great anyway!!

Hope you have a date for your appt soon and i really wish you all the luck in the world just dont give up, you deserve to be happy with limited pain 😀 xxx

It has been a real nightmare in not gonna lie. Emotionally thankfully I am, I have a wonderful partner who is incredibly supportive and actually has pelvic pain syndrome himself so legitimately understands (!) Oh wow how much is private costing you? I’m an apprentice so not exactly flush with cash sadly. Anyway I had excision on the NHS and they said it was fine length wise and The guy was an endo specialist too? A lot of gynaes double practice as both NHs and private so perhaps could request an NHS referral for this surgery under the same Dr but NHS? Oh wow that’s low they said you were imagining it. Endo can cause nerve damage too so even if there’s was no endo it doesn’t mean you’re not in pain... I really hope you do have more good days than bad! Endo isn’t such a tough disease.

That’s a good idea, I’m off today so I can do that at some point. It could also effect my job too tbh, so I really need it sorted. Do you think it’s wise so ave my coil pulled? I’m bleeding anyway so it’s clearly not doing it’s job... and it’s not like I can have sex bc it’s so flipping painful. Thank you my lovely, same to you and I wish you all the best in defeating this bastard of a disease! Xxx

Private is not as much as i thought it would £4000 still expensive don't get me wrong but i was expecting more!! I know my gynae is NHS and when i went private (asked for him specfically as he is so good!) I saw him walking across the field to the private hospital it was quite funny I kept thinking each step je took was another £10!!!!

At least you have a good supporting partner hope they get better soon as well xx

Today so far has been a good day!! (Touch wood)

Personally i am not a fan of the coil as it does not really work for me but makes me an emotional wreck. I am already a sensetive soul and i now cry over silly things!! You are the only one that knows your body and if it does not feel right get rid of it otherwise you are not putting yourself first which you need to do. Anyway whats the worst that can happen? It gets worse without it, then get another one put in at least it will put your mind at rest that you tried!

I was also thinking and there is an endo diary app you can get which i have used in the past, as long as you are honest and update it daily it can be pretty good as it will show any patterns and you can forward the reports to ur dr. Might be worth a look?

Yeah hopefully someone will find a cure one day but i honestly feel like i deserve a flipping medal to just getting up some days! Lol

Hope you are having a good day off. I am unfortunetly am working till 4 so not much longer to go but been a long day xxx anyway sorry for rambling xxx

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