endometriosis and zoladex

[kentmumtj]

My daughter was diagniosed with very severe endometriosis a few months ago. This was following 8 months of severe pain, weight loss and many hospital admissions. She had ehr appendix removed which was when they discovered her severe endo. It was everywhere and lots of it. She was only 17 and didnt even start her periods until she was nearly 16. Anyway shes had another op to remove it which they felt was successful she was also put on progesterone only pill. Shes been on them for 3/4 months and is back and foth from hospital and docotrs as shes still bleeding 80% of the time and in such severe pain and vomiting that even Tramadol doesnt work very well.

The docs are now saying she needds Zoladex injections.

I would like to hear from anyone who has had this drug or suffers like she does. I want so much for her to be pain free and be able to live a 'normal' life especially given how young she is.

The future prospects are also very scary.

I was 23 when i had zoladex injections. Have they suggested this to give her body a rest from bleeding? It brought on a temporary menopause for me, hot flushes and mood swings included! I had them every 4 weeks for 6 months. I also have 3 boys :)

be happy to answer any questions...

I also had Zolodex as treatment. I had the implant for four years and took HRT. It gave me my life back - before I had the implant I struggled to function. The HRT worked fine for me.

hi i have suffered from endo since iwas 15 (am 33 now) i haven't had it as severe as your daughter but i was still in loads of pain and had 2 laperoscopies (can't spell that word!!) and laser treatment to get rid of it. I also had a pill thing that i had to take continuously for 9 months to stop my periods (mimicking pregnancy) they helped in the short term nut it always grew back.

I also have been on the combined pill since i was 15/16 in order to try and make my periods lighter and therefore less painful which kinds worked. At one point the told me to take three packets on the trot and then have the weeks break as then if it was still painful/heavy at least i would only have 3 a year. This did help although i didn't like constantly being on the pill as i don't like taking any medication!

To be honest the thing that i suppose has 'cured' me is getting pregnant and having children!( not that im suggesting your daughter does this yet!!!)
but since having my kids my periods have been fine, in fact i don't even need to take paracetomol now at all for them which is amazing cos for a while i was on some pretty heavy duty painkillers from the docs.
Having said that they do seem more painful if i use pads rather than tampons!

One of the best things i found for the pain was a tens machine. I could put it on in the morn and wear it to work and no one noticed.

hope this has helped, check out the endo website, haven't been on it for years but there might be somone on there who can advise more.

Forgot to add, the reason I came off it was to have a baby. DD is now 2.5 and I am due to go into hospital a week on Tuesday for a laparoscopy and hysteroscopy as my symptoms have returned

Hi sorry havent been on to get the responses just that my dd has been really really unwell again. Think the consultant wants her to have this as she needs to get some sort of quality of life back. She hasnt been able to go to school or work (even though she does have a job) but the pain and bleeding are so severe she is lucky if she manages to work 4 hours in any one day.

Anyway we are going to see the consultant for more discussions this Wednesday. I have read up on this medication and i know it is my daughters decision to make but i wonder about putting her into a temporary menopause and how this may affect her in the future ie child bearing. Thing is the consultant isnt looking at this from that point and just from the point that she needs to be able to live relatively pain free. I too agree with this as the past year has been a huge strain on us as a family.

Must say i am so surpised that endo could cause so much pain and problems ie vomiting, weight loss, and i guess the collapsing and ending up in hospital needing to be placed on a drip are a consequence of that.

Im also worried as i have read about the mood swings and this concerns me as my dd is incredibly low already and to make her even lower would be awful to watch.

well she has her first implant today. Her consultant advised her to have a baby last week as he says there is nothing else he can do. His collegue has refused to operate on her again as her endo is too extensive.

The future looks so bleak for my dd

I have a lot of sympathy for your DD writing as someone with endo herself.

I would have a look at this website:-
www.endometriosis-uk.org and give them a call. Do read the forums as well.

Your DD really needs to find a consultant gynae with both vast experience and a specialist interest in endometriosis (not all gynaes have up to date knowledge when it comes to endo) as the two people she has seen so far are not experienced enough to treat it. She does need to see someone else and asap.

I also have endo apparently on my ovaries, never even heard of it until around 3 years ago. Was referred by GP to a general gyno and had a lap to remove the endo after being diagnosed by a scan, 6 weeks later the excruiating pain came back - imo it IS worse than child birth dont care what anyone else says for me it is the most painful thing I have experienced!

Anyway after the pain returning I decided to research this damn horrible disease found the endo site which is my daily bible and asked for a recommendation of a surgeon...am now under a brilliant guy in Nottingham who totally understands, specialises this subject.

Im so sorry that your daughter at this such young age is suffering like this. Im assuming that the consultant/surgeon she see's is a specialist in this area. Can stress this enough

My pain only comes around ovulation and period time - I have been told its the blood that's released (even at ovulation) that grabs on to the endo patches and causes the pain - I take diclafenac and also I find tampons help to reduce the pain. My pain left me for around 6 months but last month woke up at 5am in terrible pain, wiped me out for 2 days

Also I have read up alot on this consultant - who is based in West Yorkswww.endometriosis-consultant.co.uk/. Alot of people recommend him on the endo uk site...its worth considering even if it's only for an initial consultation.

Here is a letter that was posted and reads very interesting - this guy definately knows his stuff about this subject and is worth a go
endoboard.yuku.com/topic/8155

thanks people. I have joined the endo site and have been reading/researching as much as i can, it worrys me greatly as she has and still is focussed on being a mum as being the most important thing she wants to do with her life although she acknowledges that she is far to young at the moment.

She has had the first zolodex injection and is really unwell, sick, vomiting, pain, extremely tired, very moody, short tempered. Her consultant has said to her that after this treatment he has nothing else to offer her.

Can this be right???????

Kentmum

Would keep on doing your own researches via the endo site, you need to educate yourself as well as your DD.

I sincerely think your DD needs to see another consultant gynae asap and should be re-referred (GP should refer her again). The person whom she is currently seeing does not actually sound experienced enough to treat severe cases of endometriosis. BTW did they tell her what stage the endo was at?.

I would go all out to find a cons gynae with a specialised interest in endo; these people do exist.

they said it was stage 3/4 and very severe.

I think i will speak with GP with dd as shes just so miserable/moody and in pain all the time that she doesnt bother asking them questions anymore.

Attila what stage is your endo? are my dds symptons normal for this condition

Kent - what area are you in?
look on this site - put in endometriosis and your area and you will find a specialist - www.drfosterhealth.co.uk/consultant-guide/.

I also search the name I had been given on this site, found his secretary's tel number and rang her for chat, he was in the office luckily and I spoke to him which made me feel tons better. anyway got my GP refer me to him.

Its defiantely worth a try making sure you DO have the correct consultant to treat your daughter - it is always worth a second opinion

I really feel for your daughter, when someone tells you there is basically nothing they can do, why would you feel the need to ask any further questions?

I can't remember what stage my endo was at, I believe it started when I was about 14 as my periods were horrifically painful. I was told by unhelpful male GP that I had to accept my painful periods as I was female. Given painkillers after a few years of going back to GP.

Eventually, I saw a female GP when I had almost collapsed from the pain, she said endo, saw gynae who also said endo.

I read everything I could on endo and overhauled my diet to help me.

Did round of drugs starting with Dydrogesterone (Duphaston) as I had already been on the combined pill previously. When that didn't seem to help I went onto Buserelin, like Zoladex it puts the body into a fake menopause. I took HRT tablets too. I was 27 at the time. Although it helped my endo was aggressive and it continued to get worse.

Booked for laser lap and dye. Was told after op that they weren't even sure if my left ovary was producing eggs, my scar tissue was mainly in my pouch of douglas (explained why smear tests were tear inducing) and I had severe scarring on the ligaments in my pelvis.

Because of my age (28) and the fact that I was married etc he advised me that if I wanted a baby then to start trying as I would probably need clomid if not IVF. We were devastated. The only other option open to me was Danazol which I refused.

I was pregnant in 2 weeks!!!! I don't know who was more shocked me and DH or the gynae

We think it happened as my body was an endo free as it could be. I went on to have another baby 3 years later.

My lifestyle is very relaxed, I have little stress and I think this helps me massively re endo. At present I am not on any meds for it and only have pain when I ovulate and when I am on my period.

Your daughter needs to be referred to another gynae. You can hire TENS machines from lots of places and she can try one before you purchase one.

clotted - i am in kent i will have a look for a specialist in my area

fizzy - you talk about being stress free and overhauling your diet. My dd is always stressed and i think its because of the pain, she has been on tramadol for 9/10 months now and can not function a singel day without them. She has collapsed nurmoerus times and been rushed to hospital where her veins have collapsed be cause she is so dehydrated from the constant vomiting, she can vomit upto 20 times a day easily when the pain is bad.

You talk about diet, this is something i can re4ally help help her with. What sort of a diet should she be eating.

Glad o hear you went on to have 2 beautiful children. My dd has just turned 18 and not even in a relationship but does say having babies is the most important thing in her life

Hi, can you get your dd referred to a pain clinic?

I have had endo since my last c section, there is a big inoperable chunk of it in the scar tissue.

I have had zoladex treatment twice for six months each time, it shrinks it down and the false menopause is far preferable to having dreadfull periods. I had an injection into the endo, waste of time that was!

The zoladex works for a bit and take the edge off, it does grow back though.

Hi all well my dd has had 3 months of the zoladex implants so far and is having side affects similar to these i would imagine are like a menopause, hot flushes etc so is also on HRT.

She is at last able to be a 'normal' teenager again, the pain has become manageable and she is taking less painkillers with each day which is fantastic, the consultant she is now under has also noticed that her bowels are constatnly spasming which isnt good so shes on medication for that as well.

Im just dreading the implants stopping and what like will be like after for her and am really hoping i doesnt go back to how it was as she had no life at all.