I'm looking for some reassurance please from anyone who has been diagnosed with severe endo but has been lucky enough to conceive and have a baby successfully...
We just completed our first ivf cycle which unfortunately ended with a negative result. I'd had laparotomy I'm Nov last year where severe endo was diagnosed (after years of problems and misdiagnosis): surgery corrected kissing ovaries and surgeons worked on two ovarian cysts. I also have adenomyosis and apparently one fallopian tube is pretty damaged. I was put on zoladex for 3 months to give my system a break.
I responded well to ivf drugs and had 19 eggs collected with 9 fertilised and 3 embryos (they implanted two).
We'll try again to conceive ourselves and may give ivf one last try. But the more I read the more terrified I'm getting on even if we do fall pregnant will the endo wreck everything? I'm 40 now and just looking for reassurance we might still be in with a chance, I know ultimately it's impossible to say but hoping for the best. Thank you XXXX
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carrie75
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I'm sorry to hear that your ivf didn't work on this occasion. I have responded with my story to a few posts similar to yours over the recent months but yes, l do have severe endo and yes l conceived naturally. I do believe a lot depends on the location of your endo, successful surgery prior to trying to conceive as well as the overall wellbeing and health of both you and your partner.
Hard as it is, try not to focus solely on your need to conceive, worrying and stressing makes it harder. I am totally guilty of this and remember the frustration and desperation l felt every month that we were unsuccessful. Perhaps, if you can, take a mini break or holiday together where you can relax and enjoy your time together. I am a little younger than you but was still told to get a move on(!) I am a month short of 34 and my son is 7.5 weeks old. I was lucky enough to conceive naturally so please don't give up.
Yes me. I'm stage 4. First cycle failed and I was very downhearted. 8 months later we did a 2nd cycle at a private clinic who used a different protocol. We had 5 frozen embryos and one put back resulting in my ten month old son. Do not give up yet. Sometimes the first cycle is experimental. The clinic should be willing to suggest and implement tweaks considering things they learned on the first cycle. If you choose a different clinic they will ask for your notes from the first. Clinics differ in their approach and it's worth doing your research if you aren't happy to stay with your first clinic. But I would say pick yourself up and make a plan. Don't delay. Feel free to PM me if you like. I'm always happy to try and help. X
Thank you all so much for your messages, these are really inspiring, and huge congratulations to you on your lovely babies! This is really wonderful to hear.
We're going to get a holiday booked hopefully for April and just get away to the sun, relax and hopefully things will happen naturally. We have been through a stupid amount of stress in the last year and I worried going from endo surgery then back work then on to ivf might all be a bit too much.
We're waiting on a review appt with our clinic and I'll ask for a summary of the surgery (it was carried out at the same hospital) so we can see exactly what we're dealing with. If no further surgical checks are available at the clinic I'll ask my GP for a referral to a specialist centre also. I'm looking into some acupuncture to help with overall stress levels too, fingers crossed though.
Thank you very much everyone, it's much appreciated! All the best 💜 XXXX
Best of luck to you Jade, I was really scared ahead of the ivf treatment too but must admit it wasn't half as scary as I'd thought. I'm a bit of a needle phobe but honestly I didn't feel a thing when I was doing the injections at home. The nurses and doctors we had were all so lovely and supportive too, which really helped. I will keep everything crossed for you, all the best! XXXX
Aw I know what you mean Jade. We were trying for a few years, nothing was happening and thought we better get this checked and luckily, our GP listened and referred us to the fertility clinic. Lots of tests followed from there then a rapid decision to send us for IVF. But it wasn't until the IVF scans were being done ahead of starting injections that they noticed endometriosis, adenomyosis and chocolate cysts. They sent me for what they thought would be a one hour laparoscopy but became a 3 hour laparotomy due to the mess the endo has made. Docs were confident they'd done a good job though - just hope endo is at a quiet stage just now to let us try naturally. But from all the inspiring stories on here we're reminded to keep on trying and hopefully, we will get there 😌 XXXX
I also have severe stage 4 endo everywhere and am so lucky to have two amazing boys naturally, but friend who couldn't conceive, has just adopted a little girl which is equally an amazing. Good luck xxxx
Thank you so much Bex79! I hope you are keeping well, it's really lovely to hear about your two boys too! And also wonderful news for your friend with her little girl! Anything is possible. We will keep our fingers crossed 😌 XXXX
Hi there, we managed to conceive naturally despite stage 4 Endo and adenomyosis. I will message you a list of stuff we did when ttc - lot of holistic things that may help, if even only to make you feel healthier and stronger in pursuing Ivf process. I have no idea what specifically helped us as I tried everything! We had 2 mc and were booked for baseline tests for ivf and also a major surgery when I fell preg. I was told if I wasn't preg by 27 I would need ivf, then if hadn't had any by 30 that I wouldn't - started trying at 30, fell preg 3 times within 6 months - the docs can be wrong and everyone is different. Try not to be too disheartened with the ivf not working out first time round. It has I think about a 33% chance with severe Endo each time so maybe next time will be your time - I would highly recommend acupuncturist who specialises in fertility, it really helped me with pain management and also coping after mc. I know the girl I see supports a lot of women through Ivf process. X
Applebird, *thank you so very much* for taking the time to post this!!
I am so very sorry to hear of your me, but so pleased that you went on to fall pregnant.
I really, really appreciate your help, and am prepared to me the changes needed to help us. Bizarrely I'd been looking at various websites for acupuncture this week and am looking into dietary changes - years ago I cut out a load of stuff and feel it definitely won't do any harm at all to cut down the dairy, wheat, caffeine etc.
I really need to make changes. This week I've felt migraine niggles and bad mood swings returning, it's hard managing it with working and just want to hide some days but need to push on!
It's no prob at all. The changes i made like losing weight/diet/having surgery etc all happened over a period of 2 years or so. It's hard to work around an already busy life so know that it's ok if it takes a bit of time. Just try everything you can, some things you'll notice a big change and others you won't, different things work for different people.
The way I looked at it was everything I was doing could potentially help Endo and give me a better quality of life - even with bbt tracking, I started recording my symptoms daily alongside it and this helped gastroenterologists to ascertain that upper g.i. Issues were attributable to Endo and not separate - this saved me unnecessary surgery etc. Also helped me plan life better as I understood my cycle and how Endo affected me individually day to day.
With regard to fertility, if nothing else, you know that you have tried everything and given it your very best shot! The hospital treatment process involves a lot of waiting around so all the lifestyle stuff keeps you motivated and active in the intervening time. If you are wanting to do any exercise for stress relief etc. You don't need to go knock out 10 hrs in gym! Yoga, swimming and gentle walking can be great for Endo.
Keep proactive and don't let it get to you, remember most women don't have pain of Endo etc. in conjunction to fertility issues so you have to be a trooper to get through it - important to give yourself a pat on the back for that.
I'll just post the stuff here, some silly things you'll know or have tried in amongst. I'm not an expert, but keeping myself busy doing all this certainly helped me be proactive, I was def healthier and in less pain as a result.
Above everything - be good to yourself.
Dealing with Endo pain and fertility worries is very stressful and can feel isolating. Be around people who make you feel good, go for massages, have mini breaks, not for the 'relax and you'll get pregnant' reason, but because you deserve it and taking care of you is good for your health.
Wishing you lots of luck xx
- had a few surgeries/rounds of prostap to treat Endo.
- Endo diet - esp. Cutting out red meat and dairy. Wheat is a tough one - try switching to brown bread and pasta etc. Make healthier choices.
(I think there is a book by Carolyn Levett with recipes and so on)
- lose as much excess weight as poss as fat cells increase circulating oestrogen in the body which stimulates Endo. I tried weight watchers app which was very good. Pain reduced and creates a better uterine environment for embryo implantation when Endo less active.
- acupuncture (fertility specialist)
- both hubby and I cut out alcohol completely and took vitabiotics pre conception vitamins. (Alcohol increases chance of chromosomal malformation and thus mc, also 3-8 wks critical to early brain development in embryo)
- cut out caffeine, discovered peppermint tea fab for Endo
- cut out much of the medication I was taking, this was tough!! Even paracetamol use of 3+ weeks throughout preg is linked to probs in babies (adhd/reproductive system development) So had to do it! Horrible for the first few months, acupuncture, determination and getting preg quickly helped (had 2 mc before successful preg too)
- bbt tracking, used both my days app and paper tracker (advice and blank chart in link)
We found it difficult to have frequent sex, only 4-6 times per month due to pain at a push. So were strategic! £10 thermometer better investment than ovulation tests - so expensive and I found them to be largely inaccurate.
- on the more fun side, orgasms before and after are meant to help too. As does staying lying down for at least 20 min after.
- you probably have this already (my gp gave me it when ttc)
It is really encouraging and came just at the right time! Just had another op last week where they removed damaged left fallopian tube and also appendix; also unstuck some bowel and separated some adhesions. Consultant thinks we have a very small window of opportunity now to conceive as there is a lot of scarring inside : he thinks ivf would be the the way to go. We'll see him in next couple of weeks to figure out what happens next.
Thank you very much again Afandi, fingers crossed we'll get where we're meant to be 💗 X X
I had stage 3 endo (discovered in August 2017). It’s in my tubes - slow to spill apparently.
I’ve got a child already - endo will not cause harm to your pregnancy but it does it’s best to prevent it happening in the first place!
I’m giving it 3 months (till Christmas) to conceive if it doesn’t happen I’m going on the pill because I’m p’d off with the whole thing. I’m not doing ivf - I think if you can accept your situation (which is not a great thought) it might just happen.
Therefore I’ve decided to accept mine. After these three months are over, I’m booking a fantastic holiday all inclusive, going to have mini weekends away indulging.
I’ve decided for me, Ive spent too long wanting something and it’s not going to happen so I’m not wasting anymore of my life on it.
The fact u have one working tube is fantastic and you are ovulating - it just might take longer.
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