What to do after zoladex...: Hi there, I'm... - Endometriosis UK

Endometriosis UK

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What to do after zoladex...

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Hi there, I'm just writing to you for any similar experiences or advice please. To cut a long story short we started TTC when I was about 28 I'm 34 now. I had an abandoned cycle of ivf and got pregnant the month after. It didn't work out and it was devastating. For years I have been backwards and forwards to doc and hospital appointments. I've been sent for physio, MRI scans, counselling etc, been told I just have IBS and so on. They kept saying it was unexplained infertility. Basically I haven't been taken seriously and felt like I was going out of my mind. We adopted our daughter last year and while on leave I decided to really push for some answers about why I'm always in pain and can't seem to have a family. After a lot of pushing I had a laparoscopy last month and I have moderate Endo. There are about 12 lots scattered around my uterus, ovaries etc. Ive just had my second zoladex injection and have two more to have before I go back to the hospital. I'm scared about being in pain or hormonal for the rest of my life and never being able to have the second child that I always wanted. Has anyone had a similar experience? Thanks

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Impatient profile image
Impatient

Did they remove all the existing endo during your op? If they did, then once you recover from surgery pain (remember that the wounds inside will be right where the old endo was situated so will probably trigger the same nerve endings with pain signals) and while zoladex is keeping any remaining endo dormant, if you are still in pain then it will not be the endo causing the pains but something else.

If the surgeon just looked and did not remove the endo - you must insist on a follow up surgery by a specialist in endometriosis who will remove all existing endo. They can also run an HSG check to see that your fallopian tubes are still clear too.

If just one side is compromised you should still be able to conceive with the other ovary. If both are compromised then you have IVF to by-pass the blockage subject to finances.

Once surgeries are completed and you are no longer babymaking then you can take one of numerous methods of hormones to stop your periods and level off the hormones.

The best ones for endo are Progesterone. endo loves oestrogen so the combi birth control pills will work - but will be adding back oestrogen that your endo ought not to have.

Mirena Coil is the best in terms of lowest dose (only 20% of the pill,) and longest lasting too - up to 5 years. Takes about 4-6 months of thining the menstrual lining to the point your periods stop. When they do ....freedom !!!!

Fab no longer having periods and PMT and all that faff, and not having to remember to take tablets each day. Makes a huge difference to the quality of your life and you can carry on with it till you reach natural menopause.

There are shorter duration methods too like Skyla coil, Nexplanon arm implants both have 3 years life in them, or Depo Provera injections every 3 months

or ahuge variety of birth control pills.

We wont all suit all the methods available - it is trial and error to see what suits you and your lifestyle best. But it is certainly possible with the right surgery and post op treatments to have an endo pain free life. It doesn't guarantee there wont be trouble emerging again at some point in the future - but it can make a massive difference to improving your quality of life.

First things first - make sure that endo was removed - check if any notes were written on the hosp dicharge letter - or speak to your GP surgery if they have had a report back from th surgeon outlining what was done in the op.

If no endo was removed then ask your GP to refer you to an endo centre for follow up treatment.

bsge.org.uk/ec-BSGE-accredi... lists all the accredited endo centres in the UK.

in reply to Impatient

Hi there impatient, many thanks for your reply. I feel so much better now you have explained some of the longer term options. I have been feeling a bit shell shocked tbh.

They didn't do anything in the laparoscopy other than diagnose the endo and take pictures. They said there was too much to remove there and then. Which type of surgery would you insist on? Another laparoscopy or a laparotomy? I was thinking the same myself but I didn't know if I was over reacting. Remarkably my tubes are fine and there are no blockages or adhesions, just random patches of Endo scattered around. I think they are hoping that the zoladex will dry it up. I was wondering how they would check for improvements ? Thanks

fibrodrive profile image
fibrodrive

Hi sam here. Over the past 12 years i have lost both my tubes to ectopic pregnancies. The first ectopic took out my right tube and after was told that my chances of conceiving were low as my left side was badly scarred and lesioned. I had a 2nd ectopic 2 years ago and lost my left tube which the doctors said if i wanted more children, i would need i.v.f. i am lucky as i have 3 children and see them all as a blessing but there is big age gaps between them. I was on zolodex for 14 months and i finally felt like a 38 year old woman. The zolodex shuts your ovaries down so your endo is no longer fed. It was great. I was no longer ruled by my lady bits. I had a life!!! I was off the zolodex for 8 weeks and my god did i know it!!!! Sam as my family. All the doors in the house were taken down, and the kids did everything the first time. My eldest even moved out!! I saw my gynae on august 4th and by sept 4th i had a full hysterectomy. The procedure was done vaginally and they were able to get my ovaries as well. Normally right now my family and muself would be preparing for my periods to start on the 20th by tieing down anything that can be moved, taking all doors off their hinges and stock pileing chocolate and any other foods i could crave. We would also empty a cupboard in the bathroom and fill it with sanitary towels and buy out the chemists of every and all pain killers!! Keep your chin up. I have very good friends that have adopted due to infertility and they said the hardest thing was coming to terms with what was needed to be done medically to get her well but the easiest thing to do was give a child a second chance in a home where they are wanted and loved. God bless you and your partner for the work that you do.xx

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