Zoladex, Endo and nothing going right.

[CandyflossHime]

Hi,

I'm 25 years old and on week 3 of my first Zoladex injection. I have endometriosis on my left ovary, pouch of Douglass and suspected higher up in the abdomen. I have been on contraceptive pills from around 13 due to severe bleeding and pains but they had to stop giving them to me a few years back as none of the contraceptive pills seem to work for me regarding endo anymore and I began having burst blood vessels. I have been hospitalized 5 times in 2 years due to haemorrahaging cysts on my right ovary - the last time a few months ago before my Laproscopy to remove some endo and adhesions. My last haemorrhage was because 3 cysts burst at once and I couldn't walk for 2 weeks.

I was refused a hysterectomy because of my age and was sat down with my partner by 2 doctors who told me to have a baby, go on Zoladex for 3 months or put up with my problems. I can't just ignore them, and I am at risk of haemorrhage if I have a baby as i have Ehlers Danlos Syndrome and a heart condition too - I've been told the baby would need to be born early and I would need to be on bed rest the whole time so if i have a child it would need to be at the right time. I'm scared and My life feels like it is on hold. I even feel like i need to try and concieve so i can POSSIBLY be given a hysterectomy . Why can't I be normal. My endo pains have been worse since my lap and each month gets worse, I have been struggling to eat or sleep for 2 months and have been feeling incredibly sleepy and sick. The Zoladex hasn't done much yet, in fact my lower back pains and hip pains are worse and I now have cramps and pink discharge which is starting to turn into my normal period. Is this normal? I was hoping i wouldnt bleed again for 3 months. Im tired of not being able to walk when I am on my period because of the pains and blood loss.

I hope you can understand and offer me advice and help.

[Rachiiee]

Hello I’m currently on month 5 of Zoladex and my advice would be to stick with it. My first one was horrendous but it does get better. Im 25 also & it does help to talk so feel free to message me if you need too X

[Jane200017]

Hello, I am sorrry that you are having such a difficult time at the moment. Have you been to an Endometriosis specialist BGSE centre? You can google the nearest one to you and then insist that your doctor refers you there. I was having a really terrible time with doctors until I got referred to an Endo specialist BGSE centre in London, I think there are about 30 centres around the country and they are the experts. I think this could really help you to see them because you have other health conditions that need to be taken into consideration.

It's understandable being scared I was too, i also feel like my life has been on hold but I am getting through it and so will you. I did lots of research on the condition and this helped me when talking to doctors to understand the positive and negatives of the options they were offering. Please feel free to message me anytime if you want to talk 😊

[CandyflossHime in reply to Jane200017]

Thank you for your response. I have only seen a gynaecologist at my local hospital of whom did my Laproscopy and has sent me down this path. I was told the clinics you mention only do the same things that he can offer so I didn't think it would be worth looking in to. I will have a look now and see what I can achieve. I have done alot of research about endometriosis and the treatments and I have read many bad stories about Zoladex but right now it is my only choice. Do you know if it is normal to still have pains and have a full period during these injections?

[Jane200017]

The BSGE centres, in my experience are far better than the general gynocoligists because they speacialise in endometriosis and they treat it all the time, the operation I had at the one in London was a lot better than the one done by a general gynocologist. I had the injections too and had really bad side effects so I stopped having them but they effect everyone differently and I have heard of people that think they are great. I didn't have pain or periods when having the injections but I have read on here stories of people who have. All the treatments seem to effect everyone differently, I really hope things go well for you 😊Xx