2 operations for one cyst and Zoladex inj... - Endometriosis UK

Endometriosis UK
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2 operations for one cyst and Zoladex injection

(I know I have spelt the name wrong of the injection). Privately by 2 top surgeons they said they could take the endometrioma out (5 by 5 by 4cm) in one operation. On NHS they want to do 2 to preserve ovary (I am ok with that). But they want to give me the injection too. I have spent a lot of money on alternative treatments and not the synthetic hormones getting my cycle back to normal and now rarely have pain or symptoms so I am not happy having the injection which will mess this up. I am also not willing to have the side effects as I do not have much support around me to endure that. Has anyone had to go through the same thing? Why do i need the injection? It doesnt make sense when private surgeons do not recommend this?

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It seems to be what they offer to help with the pain and the symptoms but let’s face it the injections won’t take the endo away , I’ve been offered zodalex and I chose not to have it as I want the chance to have kids , I think if you have found alternative stuff that helps and is more natural then that’s got to be a good thing ! X

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Hi Gghbgg,

Endometreosis feeds off estrogen, the cells are so super clever they even create a their own source if estrogen to feed off. One of the most successful non-surgical treatment of endometreosis is zoladex injections because they switch your hormones off to such a low level, it starves the endo and essentially puts it to sleep.

Unfortunately once you've had endo, theres a high chance it will keep coming back as the cells can be so small they cant be seen by the naked eye so impossible for surgeons to get all of them.

I have heard of women getting pregnant after zoladex injections, as once you stop taking the injection (usually a 6 month cycle), your hormones switch back on as before. There have even been pregnancies when taking zoladex though this is not recommended due to potential damage to the baby.

The side effects are not great. As you've probably researched they mimic the menopause. I had hot flushes, cold flushes, headaches, and flat out exhaustion for about 7 days after taking the injection. I also found the injection did not last the 28 days and had some pain for 2-4days before the next injection. But I had rapid regrowth endometreosis, so perhaps mine just wouldn't go to sleep!! However, without it I couldnt walk for 2 weeks a month so it was a no brainer.

It sounds you've made good head way with more natural products - I'm 100% supportive and understanding of this. My only concern for you would be that if your cycles are regular and you're producing estrogen, it still has a regular source of food and could be reproducing quite happily, just not yet causing you pain. If you've found any natural products to prevent endometriosis please would you reply with them? I've had a full hysterectomy but still want to take preventative measures to stop it returning.

The private surgeons may feel their skills will allow them to remove the cyst and get rid if any surplus endo, and then suggest a softer hormonal control like the pill to keep it in check going forward. The NHS has such varied levels of skill, it may be they are doubling up to try and protect in case they dont get as much of it as is there.

Hope this helps xxx

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Thank you both. It took me by suprise as at the consultant appointment with the surgeon he never mentioned the injection to have before the op. Only that they would want to put coil in to prevent it coming back, to which as I am late 30s and would love to have kids so I have said no to that as for me the endo pain is so much better now I would rather have pain and be fertile, than no pain and be infertile as I dont have much time left. I am having the op nwo to get rid of the cyst to stop the psychological worry, the other endo in pelvis I am ok with as it seems to have got a lot better. I use bio identical progesterone cream that has helped decrease oestrogen and also my mood. Also an osteopath who specialises in female pelvic disorders has been so helpful and acupuncture. I do take serrapetidase, DIM, Endo complex by wild nutrition. and stick away from gluten and dairy and sugar 90% of the time. Exercise has helped a lot too. I only have had trouble for a year, previous never had symptoms and my periods were great which is why I am slightly resistent to doing too much hormonal stuff as I feel this endometrioma could be a one off. My other ovary is fine. I will chat to them next week and see if I can have the ops without the injection. I had mental health problems for 4 years leading up to last year due to some bad things happening in my life and I need to concentrate on continuing to feel better with that and I feel much better now, yet know if I have side effects and the 2 operations on top I think my mood will get dangerously low and if that happens the op would have to be postponed, which is what happened in the winter after trying the POP. Thank you again, it has helped hearing your experiences. Thank you. XX

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It sounds like you're taking a really balanced approach and honestly I think you're doing absolutely the right thing. My consultant hadnt mentioned zoladex to me until until I'd got desperate enough to wave having more children - if you want children there are much safer routes to travel. I really hope the surgery goes well with a swift recovery and you get it alll back in control to start your family!!!

All the best xxx

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Hello, I have chosen a very similar treatment plan, accupunture, endo complex by wild nutrition, diet change and today just started serrapepatase. I am only one month in but actually just feel constantly sick and hungry. i have my opp to removed two Endometriomas in one months time. I am really scared as the consultant said that until she can see the cysts she won’t know what the best method is to remove them. I am also going private x

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Hello, sorry to hear you are having 2 removed. How big are they? Who is your surgeon? Keep in touch with how you get on. Hypnosis is good to listen to leading up to the op - scientifically proven to help healing. Is your diet good and varied - I do take B12, Iron and ensure I get a lot of protein - my physical health felt a lot better on the diet - we all vary with genes and metabolism also check if you do not see or feel improvements over the next few months. Xx

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Of course they will remove it in one laparoscopy. How many does one need? Just one well-performed one. A friend of mine had a 10-cm endometrioma removed + much more endo and they preserved her ovary and everything. Doctors who say you need more than one laparoscopy (the first being "explorative" --> bullshit!) are not good endo surgeons.

I don't know what Zoladex is, I don't have it in my country. If I were you, the only thing I would accept is Visanne or Primolut-N :)

Best of luck with your lap (HOPING it is with an experienced endo surgeon!)

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Hi, which country are you in? Good to hear your experience. The first op is to drain the cyst so it is smaller to cut out. X

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You can drain, excise a cyst + excise all other endo in the abdomen in ONE SITTING. Those who tell you you need more than one lap are not truly capable and experienced endo surgeons. I'm from Italy but I've heard excellent endo surgeons from other countries say you can get a lap done well the first time.

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Thank you for sharing that. After reading our guidelines for our health service it says over a certain size to do 2 ops if they are wanting to conceive. I think I will go abroad to a surgeon who does it in one. The injection is another thing I do not want. Thank you again for sharing.

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That's ridiculous. All women I know who had cysts and/or severe endo (on the bowel, bladder, urethers and more) had ONE LAP at the best endo centre in my country and they conceived naturally afterwards. You don't need a second lap unless endo returns after a few years.

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You don't need to go abroad, there are a few excellent excision surgeons in the UK.

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Please refrain from telling someone what to do. This is not the ethos of this website and is disrespectful. Thank you.

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