I was diagnosed with endo in 2000. I've had four operations to burn the endo away. Two I have paid for privately And two on the nhs. I only seem to get 3/4 years out of it then it needs done.
In December 2013 it all started up again with pain and bleeding even though I took pill constantly. My GP emailed consultant and asked best course of action. I was given the Zoladex jAg 3 week Ago and ended up in hospital with severe pain a week later. They said it made it worse before it gets better. I was brought in again to hospital on Thursday with horrendous pain again. They are giving Ct scan to see if it's a hernia/kidney stones even though the surgical team examined me and told me it's highly unlikely. Today I was told it would get better with 2nd Zoladex jag????
I'm got Zoladex nearly 4 years ago and yes stopped the bleeding but not the pain.
I'm getting nowhere and doctors aren't listening. What can I do?
Sorry for long post!
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Viks2106
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You need to ask for a referal to one of the accredited endometriosis centres in the UK. They have a team of different endo specialist surgeonsavailable to work on what ever organs your endo is growing on.
If the endo is recurring then the burning is not effective and not working deep enough to remove the endo entirely - just taking the top layers off which still leaves active endo underneath.
The solution is excision surgery to ctually cut deep enough to remove the endo.
Also they will cut back the adhesions that have regrown since the last op. They always regrow and they can cause a lot of pain problems, so your pains may be just as much adhesions and endo.
Have you been taking the Pill back to back to not have periods or not have many each year, up till you were put in the zoladex implant.?
If you had not stopped your periods then each one runs the risk of spreading endo cells from the uterus along the fallopian tubes and in to the tummy area.
Ideally you should aim to stop your periods after surgery other than when you are trying to conceive.
The zoladex goes through a flare stage for about a fortnight where it overloads your body with hormones which does make all symtoms a lot worse- but the overload causes the pituitary gland in the brain to shut down. That shuts down the ovaries and stops the endo receiving any hormones so they do not stay active - the fall in to coma. They will still be there asleep waiting to wake up - the drug doesn't kill them but it stops them being ctive and causing by bleeding.
If you are still in the same pain despite the Zoladex - then it is unlikely the pain is endo at all. Much more likely to be nerve damage or adhesions that is sending the pain signals.
At any event you need to be under the care now of one of the accredited endo centres in the UK.
Find your nearest, or most convenient to travel to, endo centre - note down the details and ask your GP to refer you to the endo centre.
There shouldn't be any need for repeat surgeries so often if a proper job is done to remove all existing endo and you take steps to stop your periods afterwards. It should make an enorous difference to your chances of endo spreading.
It is not fool proof as we don't know all the ways end spreds but it should help a lot regard the endo.
As for adhesions - every surgery encourages more of those - so that again shows why it is essential to have proper and thorough surgery to excise deep endo.
Nerve pain may also be tackled with surgery and possibly hving nerve blocks injected to stop the unwanted pain signls reaching the spine and then the brain.
Thanks so much for replying to me. It means a lot.
I was told to stop my pill once a year so that I wouldn't bleed and make the endo grow but I was bleeding sometime 3 times in the month.
When I got sent home two weeks ago my Gp sent urgent referral to one of the specialist centres you sent a link too. I've heard nothing, do you or anyone know how long it takes? I was told 14 weeks is the non urgent time.
My pain is still the same today and now seem to have caught a bug in the hospital. I'm so so tired and just feel like no one listens and I will end up home with just painkillers. I love my job and my boss is amazing with me but I am starting to worry it will effect my career and chances of promotion etc. Sorry to sound so depressing!
Colin my partner is amazing and has been so supportive but I'm also worried that I will drive him away with my emotional outbursts.
Sad to hear you are having a rough time. In my experience on the two occasions i was admitted to hospital for pain relief i was not offered any treatment there and then only morphine to help the pain. The last time i was admitted ( last month) the consultant told me that the endo is not seen as an emergency and that they have to conduct a planned approach. I was furious at the time and couldn't understand it. However i had a diagnostic lap last week which revealed endo has spread to bowel so will need a gynae and colon specialist so they were right not to conduct lap at that time. I do think they have a protocol not to do a lap unless they suspect an emergency (twisted ovary for example) Hope this helps but i didn't back down and i knew it had spread to my colon. We know are bodies better than they do
I just feel like it's such a waiting game And can't live the next few months constantly in and out of hospital and missing work. You are right we Deffo know our bodies better than anyone.
It is a waiting game but i understand that things generally work out at the right time although it doesn't feel like that when you're in it/going through it! Take care and hope that you're out of hospital soon.
Hugs to you - I am bunged up with a stinky cold today too. YUK !!!!
and the ovrian cyst I have, is dancing about as well.
Waiting lists vary - according to demand at the endo centre, but 3 -4 months is about average from what i have read of other ladys' experiences on this forum.
I think you need it burning again I found that pain does not stop on the injection and ct scan does not show endo you need op again I think I have had 13 on nhs and 3 private good luck and do not let them bully you to going home without action
Thanks for replying. I've now been told no CT scan but an MRI scan will be done. The hospital have for on touch with the endo specialist who is in this hospital tomorrow and will ask if he can see me. Hopefully he will. It's so hard to be forceful when I'm so tired and in pain. Will just have to put a brave face on and hopefully get the right outcome. Thanks again. Sorry that you have had to go through 13 ops! Jeezo x
Really?! Why so they want an MRI scan? Surely that costs a lot of money? I've been told it would be at another hospital so I would need to be transferred. Hoping the specialist comes to see me first thing. I've asked for a sleeping pill as the hospital is so noisy. Thanks again for your advice/support x
Excision is the best form of surgery! I'm endo free after 10 yrs of this! So I know what you are going through!
I've had 5 surgeries in all, 4th bowel and bladder stuck together! This was rectified! Excision was preformed as laser just burns the layers away and it comes bk. 5th lap due to pain again, however when they went in, no endo found! Only minimal adhesions! My stomach kept blowing up and I had pain down right leg! B4 4th lap was put on pregabalin small dose, then increase to 600mg daily! This was the cause of the stomach blowing up due to urinary retention which was caused by pregabalin!
I'm now down to 150mg of pregabalin and have no more blowing stomach or urinary retention, however the withdrawal from cutting down the pregabalin was horrendous!
I wish you luck, definitely ask for excision, I'm still on mini pill so no periods for me.
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