Ivf: Hi all Ivf is the only option. I'm... - Endometriosis UK

Endometriosis UK

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Hi all

Ivf is the only option. I'm just needing advice on anyone who has been down the route im about to go down. I have no tubes due to endo, I have cysts on my ovries. I'm currently having an op to have them removed. Has anyone had this and gone through ivf and it's been successful? I'm so scared that when I have my cysts removed I'll have no eggs due to damage i was told by my doctor.

Thank you

11 Replies

Hiya, I have endo and had surgery to remove it, flush the tubes etc. Following surgery I had 3 months prostap then went onto ivf. The 3rd round of ivf was successful and I’m currently 13 weeks pregnant. I think either the surgery or the prostap effected egg quality /amount which is why the previous cycles didn’t work but the consultant said surgery /prostap was my best option before any ivf. Good luck xx

Bobbiejane28 in reply to penny24

Oh penny that's wonderfull I'm so happy for you. so can I ask you a few more questions if that's okay as I'm still in the dark with a few things. I have no tubes and still have endo, and my ovaries have 2-4 cysts on both. Having surgery to have removed next month . Now in your case did you have tubes and anything like cysts or anything when went through ivf? Also financially how much was your ivf and who and where would you recommend for me to go? I have linked up with 3 places but this is all new to me ivf, much help is so greatfull. Take it easy and all the best in your wonderful pregnancy honey xxxx

Hi Bobbiejane28,

I had my op over year ago. Lost my ovary and tube due to orange size endometrioma. There was another cyst on my left one but they didn’t want to risk loosing this ovary so they left it. Had 4 3-monthly injections. Now I believe we are very close to have our ICSI because we’re going for an appointment with all consent forms signed next month. I wish you all the best and I know how hard it is but you must be positive about it! Best of luck!

Hi Carolina

Thank you for your message. I'm currently waiting to have my op to have my cysts removed from both ovaries. I'm scared this will damaged them and I'll have no eggs at all. Is it true you can't sell your eggs if you have endo? All the best hon take care xxx

penny24 in reply to Bobbiejane28

I believe that if u have endo u can’t be an egg donor xx

penny24 in reply to Bobbiejane28

Hi there, I had both tubes and ovaries in place for my ivf. I had surgery to diagnose and remove endo and then prostap before the ivf. I had nhs treatment round 1&2, round three I joined a refund programme (can’t name it on here) but if ur interested I can message u. Think it was £8700 for three rounds and if no live birth 70% refund. Hope this helps xx

Bobbiejane28 in reply to penny24

Hi penny

Thanks for that, one thing is my financial side of things isn't 100% and I only can afford monthly payments. don't have the full amount in full. Do you know where will do the best place to set up a payment method, seeing as my credit rating is poor too. I am in a pickle on that side . Thank you xx

penny24 in reply to Bobbiejane28

I don’t know if anyone I’m afraid but I’m sure clinics have come across this before. If u have a clinic u like then u could ask them. There is a clinic in London that does ivf and includes meds for £2500 so might b worth googling cheaper ivf uk or London to help find somewhere. Good luck xx

Hey Bobbyjane28,

Sorry for the long reply but hopefully it will answer some of your questions.

I'm currently in a similar situation. I have severe endo but I still have my tubes, not that they are much good to me. One is completely deformed thanks to a cyst which was growing under it and the other is almost completely blocked. I also have agressive ovarian cysts but mine are so big that my surgeon was reluctant to disect them as she was convinced I'd lose both my ovaries during their removal anyway. As we haven't yet started our family she was reluctant to do anything to compromise my fertility. During my last op what didn't burst while they were in there was drained as much as possible. When I awoke she advised I go on Decapeptyl with HRT add back which would reduce them to a size where they could be removed more easily (and put me in the menopause). In the meantime we were sent to the NHS fertility specialists. The decapeptyl reduced them within 3-6 months but I've had a lot of messing about with HRT to get the side effects on an even keel.

When we saw the fertility doctor they told me that the cysts, at their original size, would cause problems with any egg retrieval and possibly also cause problems with the drugs used in the IVF process. We were advised to pay for a private egg retrieval prior to a further surgery as the likelihood of losing my ovaries, and our chance at a child of our own, was high. The only problem with that is that the NHS won't pay for IVF if you have eggs in storage which were retrieved privately prior to treatment but they won't offer this to endo patients either which is ridiculous. I was lucky though, the decapeptyl has since shrunk the cysts to manageable sizes and stopped any new growth of the endo. I still get pain from the scarring, organ adhesions, and possible adenomyosis but I should be able to go forward with IVF now with few problems caused by the cysts. I've now decided to wait until we have completed a successful round of IVF before having the cysts removed rather than risk losing my ovaries prior to us having a baby.

Unfortunately I have other medical problems which have stopped me reaching the weight criteria for NHS IVF which is a BMI of 30 or less. Private IVF can be done when at a BMI of 35 or less. Most health boards will give you between 1 & 3 rounds of IVF on the NHS providing that neither partner have any children (or if you have children from a previous relationship they are not living with you). I've also had to get genetic testing done because of my other conditions. They do not tolerate any nicotine in your system for at least 3 months prior to going on the waiting list so if you smoke you can't use replacement therapy either. The NHS waiting lists are usually 6 months long too and you have to still meet the criteria when you get to the front of the queue. There may be other criteria which are relevant to you which can be found on the NHS website.

Due to the problems we faced we considered private IVF and found that dependent on where you go and the processes involved in your case it can cost anything from £6000 - £10000. There are different kinds of IVF which depend on the problems you have. There are loads of private IVF facilities many of which will offer deals so if you don't get pregnant you don't pay. I assume this is not dependent on the pregnancy itself being successful. The local hospital will also provide a private service.

I am not making any assumptions about your situation but if you haven't been referred to the NHS fertility services because you haven't been trying for a year then just lie and say you have and get your consultant to refer you. It's not like your just impatient. You don't have any other option.

I hope this gives you a good idea of the process and if you have any questions feel free to get back to me. Good luck.xxx


Thank you for your message. Was lovely of you to give me all that info. How strong you sound too so keep up the positivity honey. I really think that ivf is going to be such a struggle for me financially though. I have been told i can't get funding due to having two children already so private would be the only way. My problem and issue is. I was diagnosed this awful disease due to negligence that I believe ,, my placenta wasn't removed properly so that caused scar tissue and adesions to attack my tubes and ovaries. So I believe I should get some help in that matter, I've tried to claim on this as it wasn't not my fault and I was fine medically before had children and during. It was afterwords from the lack of being rushed with when being in Labour that this accured .. There is also a possibly chance my ovaries will be damaged after my o p from removing all my cysts off them. One thing I wanted to know is i m in early stages of menopause and I want to know does your self any one else suffer from growth hair on there face under there chin and else where were a woman shouldn't. I don't have normal hormones due to not having any tubes and can't ovulate properly .. I'm so stressed i feel that I'm in the dark and don't know where to start or Evan begin. I've contacted Nottingham car ivf Manchester one London one and I've been told i can't sell my eggs if i have endometriosis? As that was an option for me to gain some money towards ivf. 4-5 grand it's costing ... Take care speak soon xxx

That's a shame Bobbiejane 28. It doesn't surprise me that they would not take eggs from someone suffering from endo. If they have quoted you a relatively low sum of £4000-5000 then with a lot of self control and a proper analysis of your family income and expenses you could potentially save that in a short period of time. Even if it takes a year or two it's worth it if you really want another child although I would recommend that you think seriously about whether that is the best decision for your family when there are already constraints on you financially.

I've never heard of endometriosis being an acquired disorder via the process you described. I would assume that scar tissue caused by labour/pregnancy issues would not be endometrial tissue and that it is possible that you had a-symptomatic endometriosis prior to your pregnancies. The scarring and hormone changes caused by the pregnancies could then have initiated the pain as the tissue grew once again after the pregnancy. I am not a doctor though. I'd be interested to see if you could find a doctor who would agree with that considering they have no idea what does cause this condition or even what the real mechanism of the disease is. I don't know if you are aware but it is also widely accepted that pregnancy itself stops the growth of endometrial tissue because of the hormonal processes that take place in the body so if you did have it prior to getting pregnant it would become a-symptomatic during those 9 months.

Unfortunately many women grow hair in strange places on their body, chin, and face whether they have hormone issues or not, especially as they get older. I wouldn't see it as something that you are not supposed to have but as a natural process of life. The only thing that all women have in common is that their bodies will change. That is the nature of being a women. Those changes are not always easy but we get through them because as women we are also strong enough to cope with everything that's thrown at us.

Good luck with everything. I hope it works out for you and your family and I hope you find a way to have the baby you want so much.x

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