My experience of Endo, Zoladex and my search for answers

Hello, thought as I'm new here it might be easier to write a blog post rather than asking tons of questions on various threads.

After having my son I found I could no longer tolerate any contraceptive pills, my aura migranes increased and I began vomiting during periods for days at a time. I always fought against the mirena coil I felt the doctors were always pushing me to have as I'd heard such mixed reports from friends and thought my body could use a break from trying out all these things. I started to severely flood, my period would soak through layers of clothes. Blood would pour out of me all over the floor and I was constantly changing sanitary towels which were no match for this at all.

I was investigated by GPs, they suspected ectopic pregnancy on more than one occasion and when it was proved that wasn't the case they just didn't want to know. I'm sure many of you have experienced the constant battling with medical professionals, to not be fobbed off with "women's troubles." It is baffling and makes me really angry that it should be this way.

I collapsed at Christmas with a huge burst cyst. I also had agonising cramps which I was told in A & E were due to degenerating fibroids. Since then a consultant has told me none of this was true and it was all down to my endometriosis.

After many internal scans they finally agreed with much nagging from me to give me a laproscopy. They found stage 4 endometriosis all over the Pouch of Douglas. After I'd recovered from the op I did feel a bit better for about a month then the old familiar pain gradually crept back again, as did the cycle of arguing with doctors, desperate for someone to take my pain seriously. I managed to get a gynae referral and they found another cyst and thought the pain I was experiencing was down to referred pain from my groin down my leg from that. I felt so relieved there was an explanation.

My consultant said the cyst was not large enough to have caused any problems but he thought I would need help with pain due to the severity of the endo he had found (and removed.)

He refused to even consider a hysterectomy and has put me on a course of Zoladex injections. I was told not to expect to feel anything for the first month. But boy did I! The side affects kicked in after the first two weeks. I had migranes continually for a week or so. I felt constantly nauseous and had horrific joint pain making it hard for me to even walk up the stairs, (more severe at night.) I was in tears worrying that this was what I had to go through to feel better eventually but a blog post on a site such as this made me feel so much better. She explained what the doctor hadn't, that the body is flooded with hormones for the first month which it then stops producing. The following week the symptoms eased and I actually had more energy than I'd had in a year. I still had pain but was hopeful.

I had the second injection a fortnight ago, no side affects but my pain is severe. I constantly have an upset stomach and some days the exhaustion makes me want to go back to bed (not possible with a three year old and my own business!)

I am trying to stay positive and hope this drug will kick in after all I have months left to go. What I find confusing from various forums is that other (younger) women are offered a hysterectomy (which I know isn't a guaranteed cure) and yet I have been told at 37 I am too young. I would be really interested to hear others experiences. xx

5 Replies

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  • Hi I cant really tell u about my experiences as im a couple of months behind where u are now and was hoping u could help me....I have lived with endo for over 10yrs, undiagnosed and like most people just been fobbed off, im 27 but with no kids (we've been trying for over a year.i was finally diagnosed in april after doc gave in and gave me a lap to put mind at ease.then found severe endo on cysts on/in ovaries. The surgeon coulndt do it so refered meto sspecialist for 2nd lap which is in aug.he said he wants me to go on the injections to put me through fake menopause for 6months.im very worried bout this as I do suffer sever pmt and mino depression, he did say I could have hrt too tho.but like u I get really bad migraines and aura 1s too.i too have thought about hysterectomy after I've hopefully had children!x

  • Hi this is my 2nd run on Zoladex, i'm 37 have no children and not in a relationship. The 1st time I was on the injections was this time last year and after the 2nd one it was heaven don't get me wrong I had pain but nothing like what it was, but I could only stay on for 6mths, and everything went back to the way it was terrible pain very heavy periods for 7 maybe 8 days then the brown staining started, I never have a clear day, I've had a lap and they found a cyst on my left ovary and the Endo has stuck to my bowel, so i'm back on the injections this will be my 3rd on the 11 of july but this time round the staining hasn't stopped I have very bad cramps and the hot flushes are really bad that i'm frightened to go out sometimes as the sweat just runs off me. On the 23rd of july i'm heading in to hospital to get the mirena coil fitted and the cyst drained, I will have to finish the course of injections but hopefully this will work, as the doctor told me this would give me time to see if I will want children as they told me that I will need all away after the coil comes out. I wish you all the best and hope to read how you all are getting on. God-Bless and chin up....Xxx

  • Hey,

    Your side effects on zoladex have been exactly same as mine...it's hard to describe how awful it is and hard to comprehend you are making yourself feel so horrendous in the hope of feeling ok.

    So many people told me to give up, put I perservered and had my fifth injection last week. In comparrison to taking pain killers like clock work i maybe take a couple of paracetamol a week. Some times are better than others. I have a couple of days a month where i get severe joint pain still and extreme fatigue but generally it has given me my life back. I'm back at work after 5 months off and actually scared of stopping it.

    Have you considered hrt? I couldnt have it for other medical reasons but may make things easier for you.

    After talking to lots of ladies on here I got lots of advice and take the following vitamins. If i miss them i really notice the difference with increased flushes etc...i get all the side effects!

    I take supermarkets own menopause multivitamin, magnesium for fatigue, evening primrose oil and star flower oil for hormone balance, soya isoflavens for hormone balance ( though does have phytoestrogen in so can't have if on strict endo diet), calcium and vitamin d for bone density loss and sage for flushes.

    Ive also purchased a mini fan, magicool spray which keep with me all the time. Wear light layers, tie my hair up at night and have large drink by bed, noted what food and drink i creased my flushes-alcohol and spicy food are known triggers, avoid hot drinks before bed, have warm not hot shower or bath. These may all seem obvious but things ive learnt along the way that have helped me survive.

    I also vomitted or had severe nausea on it so dont be scared of getting anti sickness drugs from gp, wish id done it sooner.

    The hardest thing i find is explaining zoladex to people. They see you looking a bit better and dont understand. Ive learnt to describe it as treatment then people realise you are still not 100% and also if you tell them it's a cancer drug they can appreciate it may have side effects more easily.

    You really need the people around you to know as its such a rollercoaster you need the support.

    I would say try and hold on another week. I felt like i wanted to die the week i had severe migraines and nausea couldnt lift my head, couldn't eat, lost 7lbs in a week where i was so ill. The next week it was gone and was so glad i hadnt given up treatment. Only you know whats right and what your body needs, trust yourself.

    Welcome to pm.

    Good luckxxx

  • Hi - if you have not already, ask to be screened for adenomyosis by MRI. It sounds like you may have the condition - adenomyosisadviceassociatio... x Danielle x

  • i did zoladex for a couple of months, it was rough though I have been off it for 3 months Its like a blur and I don't really remember the experience. they said it would take 6 months or so for my period to return, it took one month, im 6 weeks pregnant now. my period returned lighter and less painful. I also was hoping for a hysterectomy after this baby cos I am 33 and think two kids is more than enough but apparently im two young...I guess I will try the mirena after I deliver hopefully that will stop my period... if not... perhaps more zoladex. the worst part of this is not knowing what will happen done the line, but its your own life and your own body...

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