Hi everyone
I'm starting my first IVF cycle next week after 2+ years trying to conceive as I have severe endometriosis. I'm finding it hard to stay positive and can only see a negative pregnancy test at the end of treatment. I have daily pelvic and leg pain....feeling very sad when I should be excited.
Does anyone have any success stories with severe endo and IVF?
Thanks x
Hi wanted to reply i did not have any success but i had a few other factors ,husband low spearm count and after second go they said my eggs hwd expired ie early menopause at 38 . But alot of people i cycled with who had endow had good results .think possitive i know its hard everyone reacts differently to the treatment . Good luck if you want yo chat just send a pm xxx
Hi thanks for your reply. So sorry to hear your cycles didn't work. I appreciate you letting me know about your friends treatments and really hope you have some other options still available for you. X
Hi
I know it's hard when you're starting out, it's all such a big unknown thing, and with Endom it's tough because of the pain yr having to deal with. I am 42, with severe endometriosis and also adenomyosis issues so I know how you feel. Because of my age I did have to have a donor egg as endom had messed me up pretty bad inside, but it was diagnosed so late in life so my eggs were sadly no more. Anyway it did work in the fact I got pregnant, but did miscarry at 6 weeks. Yr probably thinking well that's not a success story?!! But IVf is a lottery, and many natural pregnancies end in miscarriage too. So don't be disheartened by the statistics you read, there are many ladies on here that have had success stories with Endom and their IVF treatment. Hopefully they'll message you. One in particular had a long battle with ttc, various laps to treat endom, and she is pregnant after her first cycle
So please try to stay upbeat! You will have good days and bad, that is the joy of the crazy journey we are on! Even though I did miscarry, my clinic said it's a very positive sign that the embryo implanted and I got a positive result. So good luck with yr treatment, and I really hope it works for you. There are many kind and knowledgeable ladies on here that will support you and answer any queries you have. Diane of the Infertility Forum is very good too
Take care. Stay calm, and stay upbeat as that will help you in your treatment!
Xx
Sign up to the infertility network on here too, if you haven't already. And post the same question on that too. You'll hear from ladies who are having or had IVF then xx
Hi! I too will be starting the long protocol in a week or so when my next period starts. My hubby and I have been trying for 2.5 years. I have had some surgeries to remove extensive endo and it is thought I have adeno too. I've been really down in the dumps about the IVF and pelvic pain. I know though that this could be a long journey but my wish for a baby is so great in doing it no matter what. If it doesn't work then at least I know I've tried. I'm doing lots of healthy things at the moment to feel like I'm giving it my best shot. I've cut alcohol, limiting caffeine, eating more protein and veggie juices, taking daily vits and having acupunture. I'm also doing mindfulness to help reduce my stress.
Keep in touch with me! Fingers crossed for us both xxx
Hi! I'll definitely keep in touch! We seem to be in a very similar situation. I start the nasal spray for down regulation on Monday and will be attending a workshop at the hospital tomorrow night.
I have made a lot of changes to my diet and been going for acupuncture too. It's all we can do I guess. I think for us Endo girls it's the pain that's the constant reminder of our infertility....it doesn't let you forget!! I know this is only the start of our journey but like you I'm willing to go as far as we possibly can before giving up. Sending you best wishes for your treatment xxx
Hello, had stage 4 endo. I had three rounds of IVF. My first failed as i had hydrosalpinges in both tubes (they were blocked and leaking fluid) this prevented the embryo from sticking to the uterus. I had them removed and TPE surgery, then another failed IVF. Then my third attempt was successful and I now have a beautiful baby girl who is nearly one. It does happen, I followed a very strict diet regime during my third cycle, not eating cold food, avoiding sugar, processed food. and used a hot water bottle on my tummy every night for months before the transfer. You should not use heat on your tummy once the transfer has happened though. This is because in Chinese medicine they believe women with endometriosis have a cold uterus and this prevents conception. This is why you avoid cold food and drinks.
I wish you all the best and hope it works for you
xx
Thank you so much for your reply, it's lovely to hear after all you went through that you now have a wee girl. I've read a lot of stories that IVF especially for endo needs to have several attempts to get it right. Thanks for your advice re Chinese medicine too, I've researched a little about it and the heating of the uterus - luckily I live in Scotland which is very cold just now so I've been using a hot water bottle most night! X
I have taken this from my chinese doctor that i went to in sheffield. She is amazing and people go to her from all over the country. Her success rate is 68%!! she gets referrals from NHS in sheffield and nottingham for people they have given up on, and she gets them pregnant. I am convinced if i had not been seeing her for acupuncture and the dietary advice i would not have got pregnant.
Here is what she suggesters diet and lifestyle :-
Eat plenty of fruits and vegetables, preferably slightly cooked vegetables.
Try to have food that contains high protein, such as lean meat, organic or free range chicken, fish, eggs, beans, nuts and seeds.
Avoid junk food, excessive dairy products, freezing cold drinks and foods, and hot spicy foods.
Stop drinking alcohol and smoking. For women, smoking and drinking cause hormonal changes that can lead to menstrual irregularities and even anovulation. These changes can drastically decrease a woman’s chance of conceiving and thus affect fertility; for men, excessive alcohol intake and smoke can decrease their sperm count and even affect sperm quality.
Eliminate caffeine, sodas, sweeteners, and refined carbohydrates. Research suggests that high caffeine intake can affect both male and female fertility, impair your body’s absorption of iron and calcium. It has also been linked to an increased risk of miscarriage.
Eat small amount of red meats like beef, lamb etc. Do not eat any meat or animal products that have been treated with growth hormones.
Avoid excessive stress, worry and working long hours or anything that is taxing to your immune system, make sure have sufficient sleep. Take regular breaks during the day, use relaxation techniques once a day (e.g. meditation or Taichi etc).
If at all possible, avoid unnecessary medications or drugs, including over-the-counter preparations. Always looking for natural remedies as necessary.
Take regular and moderate exercise can improve blood circulation and boost up your energy level, relieve stress, anxiety and depression, balance your mental and physical health, hence increase your chances of conceiving. However, we do NOT recommend any intensive exercise, especially around your follicular and ovulation phases or after embryos transferred if having IVF or ICSI. It may over consume your energy, blood and yin (essence), increase the body heat, impair your egg quality or sperm quality and quantity for men, and therefore decrease your fertility or affect implantation if having ACT.
xx
Wow thanks for all the info, especially about the exercise as I've been wondering about that as I do enjoy going to gym classes. Think I'll be having a break for the next wee while x
hello, I am so happy to know that you are a happy mummy after the long and hard journey, I am endo and two surgeries, just done my first cycle and with only one egg and lots of tears to end the first cycle, I thought I would try acupuncture, but not sure where to find a good one . would you mind to tell me the contact or Facebook whatever that I can reach the Chinese clinic that you had your. many thanks x
Hello, I am so sorry to hear that you have had your first cycle with lots of tears. I too, I am sure many other women have shed tears with difficult cycles. This is the link to her page, she is called Dr Zhao and I could not recommend her enough. She is lovely, caring, compassionate and really wants her patients to succeed as well as being an excellent acupuncturist and Doctor. She is on Facebook as Zhong Jing TCM. I wish you all the best with your future cycles and hope you are successful. xx
thank you so so much for your reply, here is properly the best place to seek comfort and support, as I feel even your husband or mummy don't even fully understand your pain, they might say something or give a hug, but nothing really in deep heart, anyway thank you and all the bestxxx
Hi Miwa.
We are in the same situation. I had stage 4 endo too and had 3 surgeries done so far. My tubes were to told to be inflamed and there are specs of cyst on my tubes. These have affected my hormones terribly and the surgeries also caused my left ovary to shrink. Thus I am depending only on my right ovaries. Dr even told me that I am nearing my menopausal stage.
I do not give up.
From no follicles at all (first try of IVF) i then had one (second cycle) then 5 ! (third cycle) which i just did last mth.
I had 3 fertilized embryos transfered but however there was no implantation. Dr said embryos cannot stick to uterus. I am feeling really down and have been crying....
But reading yr post has calm me down slightly. I begin to feel there is still hope for me....
Hi Hizah,
So sorry to hear about the problems you have been having, and I am pleased that you feel some hope after reading my post. It looks like things have been improving for you each cycle though. Thats great you got 5 follicles on your third attempt, and had 3 of those fertilise. It just shows when you do produce eggs they are good quality, as that is an above average fertilisation rate. I was 38 when my eggs fertilised that was successful (as they were frozen). In my third successful IVF I had done research into failed implantation with endo and read that there is a link between endo and immune abnormalities which can prevent the embryo sticking. And I read if you have this immune abnormality and if you use an anticoagulant it thins the blood in the endometrium and therefore helps embryos to stick. I discussed this with my doctor, and as i didn't try this in the first two attempts, he was willing to allow me to try this. So he put me on I think it was injectable heparin which i stayed on until week 18 of pregnancy, then I took aspirin until week 30 of pregnancy. I would have a read up about it as it may well help you too. I requested the immune abnormality testing prior to starting the IVF but he refused. Then when i was pregnant he wanted to take me off the injections, i refused until i knew whether i had this immune abnormality. So he did the blood test, which was normal, therefore i went onto the aspirin. I had read that women with endo and implantation problems can benefit from taking aspirin to help thin the lining of the womb as it gets abnormally sticky which embryos don't like and the aspirin helps with this. I hope this all makes sense. I wish you all the best if you do attempt IVF again. I know how hard and heart breaking it is, and to summon up more courage and energy to attempt each cycle. I think we are all very brave and amazing women who go through this.
Adele
xxx
Hi. I don't know if you would classify my endometriosis as severe. I was diagnosed at 22 after having an 8cm cyst removed from my ovary. Five years later I started trying to conceive and it took almost two years of agonising pain, hospitalisation and another cyst. Finally I did 4 months of 'menopause' injections and then straight into my first round of ivf. When it got close to testing time I felt very negative and sad - but it was positive! After some pretty bad pain in the first weeks (the theory was that implantation etc was made much more painful by the endo) I haven't had any more endometriosis pain and am now 36 weeks pregnant. Among my circle of friends and colleagues there are a few of us who have struggled to conceive because of endo. All of us eventually got lucky - one friend of mine had 9 years of miscarriages and treatment before she conceived her twins through ivf. So it's hard, but there is always hope, and you might be like me and get lucky sooner rather than later. Good luck!
I'm in the same position as you - severe endo and a blocked tube, and we are starting IVF in February.
So I don't have any success stories but I do know exactly how you feel - I'm really struggling to stay positive as well.
There is an IVF relaxation/meditation CD that I'm going to try - it's by Zita West and you can download it from iTunes. It's supposed to be very good for relaxation and positivity during treatment.
Good luck - and keep us update with your progress.
Xx
Hi there, I truly understand how you are feeling. Mine, thankfully is a success story that I am very happy to share with you. I have suffered with severe endo for over 20 years. Many operations, bowel surgery and just about to have my 2nd bowel surgery and full hysterectomy next friday due to endo. 3 years ago, I too were struggling to conceive as predicted, so started ivf. Due to the amount of operations I had, this bought me into peri-menopausal early so the clinic changed my treatment. Instead of trying to create as many eggs as possible, they wanted to stimulate the very few I had (was given 5% chance). I produced just 4 eggs. 2 survived over night, 2 were placed in after 3 days and BOTH worked. I now am so so so blessed with beautiful miracle twin girls who are 2 yrs 4 months. I was pretty much written off and had accepted I may have to adopt, which I would have done. Once ivf was on the cards, I focused fully on this and visualised being pregnant, all stages, then visualised holding my baby (didn't think for a second I would have twins)!
I tried my hardest (wasn't always possible) to remain possible that I WAS going to be a mummy, regardless how it happened. And then lots of visualisation. i didn't allow myself to think about 'what if's' at that time. I relaxed as much as possible and visualised and visualised! If you knew me, you would know how hard that was to do!!!
Wishing you much much luck and success .
xx
What a great story after all the pain and sorrow you went through, thanks for sharing. Hoping that one day I'll have my own success story to share with others. Xx
Oh wow Salperky!! I also had only 5 eggs collected and 2 fertilised which got put back yesterday at day 3!! That's amazing that both of your little ones took and turned into your beautiful twin girls 
We really hope that ours work as well and stick around for the next 9 months. So so nervous. Thanks for sharing your success story 
xx
Hi there Salperky, what a great story and I'm well happy for you :o) I just wondered, could you share your age and whether you suffered from anything else apart from the severe endo? I ask because I also suffer with stage 4 endo, but also suffer with adenomyosis, ovarian cysts and fibroids...I have the whole she-bang! I'd be very grateful, thanks xx
I don't have any experience with this at all but my husband and I have decided to start trying soon so it was really encouraging to read this thread, wishing you all the luck in the world ladies, keeping everything crossed for you xxx
Hello. I am currently pregnant with stage 4 Endo. As well as the Stage 4 Endo, I have Adenomyosis, extreme pain, 2 long operative laparoscopies, bowel issues, the list could go on, nearly 40 BUT just had first IVF. It worked!
I am currently 10 weeks pregnant. I know its still early days for me so I'm also hesitant to share it as success, mainly because I have been very poorly and was hospitalised with Hyperemisis Gravidarum, had to be put on a drip with fluids and strong anti sickness drugs.
I am still recovering and now only have intermittent sickness, so I am very lucky.
I will keep you updated but feel free to message me.
Like the other nice ladies have posted, I took the whole IVF thing very seriously and was very careful with my diet.
I have avoided caffeine for years anyway, cut down on dairy to reduce inflammation, obviously don't drink or smoke. No red meat, I don't eat it anyway.
But mainly, I ate high protein vegetable smoothies everyday, consisting of homemade walnut milk, spinach or Kale, banana, mineral water and pineapple slice inc the core. I stopped after transfer as pineapple can cause issues after transfer. Also ate alot of veg in general, not too much fruit - but i think the walnuts helped me a great deal. Also ate lean turkey mince and mainly organic food. It was expensive but it's worth every penny.
I found the initial down regulation alot easier than expected, and the stim injections too. All pretty good really. I only reacted badly when on progesterone suppositories but it hasn't affected babies health.
Any advice you need, let me know. I too had severe left leg pain on and off, caused by the endo and my recurring and large ovarian cysts. I was actually due a 3rd surgery but decided against it and went straight into IVF. I had a previous salpingectomy too, to remove my damaged and swollen left tube, which was stuck around the left ovary removing its blood supply.
I managed to produce 8 eggs, and 5 were high quality that they went to day 5 blastocyst. Admittedly my left ovary didn't produce any eggs. But, my right one kicked in, despite cysts on that too. So anything is possible. xx
Oh and the only exercise I did was going for long walks. I really think the walking helped, it's so therapeutic. The clinic recommendation to not do any intense exercise, and I drank 2 to 3 litres of water a day (drink the water as soon as you start, or before hand even better, it will prevent headaches that can occur when on down regs)...xx
Congratulations on getting ur bfp after all the pain you have had. Wishing you a heathy pregnancy and baby xx
Thanks so much Debs. I am still in shock that it has worked, we were trying for 8 years.
I was in such a bad way with the endo that I had to resign from my job, because i was just too ill, even too ill to work from home which I was allowed to do because my manager was in France. So I have really battled with this disease, it's taken over my life if I am being honest.
I still have ovarian pain during my pregnancy, but it just shows that even with damaged ovaries, IVF can still work. And I am overwhelmed at all the great responses you have had, so many success stories - it's so comforting, even to those of us in early pregnancy.
You will get there. I had treatment at Oxford btw, they treat a slightly higher % of patients with endo, compared to other clinics on the HFEA website. But I have read success stories from women from all sorts of clinics, so I think it's possible anywhere, I know I was lucky but hey - alot of women on here have been. And alot of us wouldn't have got that far without the amazing clever people in the IVF medical field - science has allowed people with disease to get pregnant and it will help you too, of that i am sure.
All the very very best and keep us updated on your progress. xxx
Hi need some info can u plz inbox me as u are hidden profile so I can't seem to message u
I am also a success story.
Just in haste I will give you the basics -
"Moderate, widespread" endometriosis was how it was worded after my second lap.
Successful first IVF Have a beautiful boy.
Second IVF - frozen cycle, worked but sadly miscarried @ 9 weeks but this was to do with the embryo, not the endo.
We are doing another fresh cycle in the summer & I feel very positive.
Tips? Download The Secret from iTunes or buy the book x
Hi hunny ,i had stage 4 endo ,lost left ovary and my right ovary was stripped back and re built .I had 10 IUI treatment and was unsuccessfull ,was so gutted it didnt work .I was on the waiting list and after 2 1/2 yrs i reached the top .Treatment started but with poor response only 8 eggs ,2 were discarded and the other 6 were fertilised .I put 2 eggs back in and the dreaded 2 wks wait .But i didnt bleed ,so off for blood test waited 4 hrs and i got a BIG FAT POSITIVE.
3wks later scan time ....TWINS !!
At 35wks i gave birth to twin boys
Never give up !!
Elaine xx
I tried to conceive for a couple of years. During that time I had several surgeries for my endometriosis. I won't bore you with all the details but my first gynaecologist did a laparoscopy and said it was far too severe for her to do anything and she said there's probably only about 6 doctors in Australia who would be able to do it. She referred me to one of those doctors and even he said it was one of the worst cases he's ever seen. Long story short, I now have two kids (aged 4 and 1) from two IVF attempts. Worked first time each time! So it can happen. Good luck with it!
Omg I am so pleased you have your family! What a lovely inspiring story xx
It really is an inspiring story! You and all the other lovely ladies have taken the time to share have given me and I'm sure anyone else who has read this thread some hope xx
Thanks for sharing your positive stories. This gives me hope.
IVF can be tuff, I have stage 4. Couldn't conceive naturally so IVF was my only option. Third time got lucky twin boys now aged 9
It's lovely to hear so many positive stories!!! I had a miscarriage in September after a frozen round of IVF but the consultant was happy that it wasn't anything to do with my endo and I was happy that at least we know I can get pregnant. I am on the short protocol this time as I developed OHSS last time and we are planning for EC on Monday. Please keep your fingers crossed for me!! Wishing everyone lots of luck. Stay positive xxx
Thanks ladies, you've helped me too! Debs, you sound FAB, hang in there!
I have found I can talk to friends but am sick of sounding like I'm whining so started a blog today to get it all off my chest. Its for me. However, if anyone wants to compare notes feel free to chip in. I am backdating quite a bit so it'll be jumbled for a while but I have next week off to sit about doing nothing so will get on with it and then move forward as we hit IVF. I had surgery 4 days ago and currently my brain is screwed as well as the normal body bruises! Rambled typing is helping though! I'll definitely be back on here, there's so much my baby popping friends can help with but I just want to hang out with them and be normal too!
That's great you've found a way to get things off your chest, can be so frustrating and lonely. Hope you're recovering well from surgery and wish you all the best for starting IVF. Xx
Hi friends.. I'm 32 + suffering from endo 4th stage.. it's my 2ww of 1st attempt of ivf.. I got bleeding today with some small clots.. wid medication it's stopped fr sumtym then I've to tke another dose to keep it cease..
day after tomorrow going for a test but already dissapointed it will b negative... bcoz it's already bleeding widout medicine.... getting cramps, sore breast tats maybe bcoz of progesterone levels...has anyone going through same problem??it's rediculous now...
Hey, have severe Endo and adenomyosis. We were due to have Ivf and doc didn't expect anything natural poss. However, followed Endo diet, lost 3 stone, both hubby and I came off alcohol and took pregnacare vits, acupuncture etc etc. Put all my stress energy into alternative treatments basically. Biggest success for us was using bbt tracking - discovered cycle and thus ovulation very irregular - this helped us with timing and after a few mc am now 25wks. My theory on it was even if I couldn't get preg naturally I was throwing everything I had at it and everything I was doing was helpful to Ivf anyway - main bonus it kept me busy and through tracking temps/symptoms it actually helped get upper gi Endo diagnosed. Infertility network was really helpful and supportive for me when we were waiting to start process - wishing you so much luck xxx
That's great news about your natural pregnancy. I'm Stage IV endo & Adenomyosis & have had 8 natural pregnancies in past 5yrs all ending in MC Unfortunately, but now trying IVF. I was wondering whether u followed any specific endo diet ?? I'm 39 but would love to be able to have a successful natural pregnancy, but time is not on my side & I'm losing hope.
Hi there, yes I tried the endo diet
It isn't that fun but that and weight watchers app definitely kept me focused and I felt a lot healthier prior to conceiving my son. All the best of luck to you xx
Hi there I to had severe endometriosis. They had to remove one of my ovaries and my tubes were damaged . We had been trying for a baby for about 5/6 years when we were told our only chance was ivf. We had our treatment St Bart's in London, they were great. About a year later I fell pregnant with ivf & had a boy. I to found it hard staying positive, but don't give up. I know people who have had 6 lots of ivf treatment & got their baby or babies in the end. Wishing you the BEST of LUCK.
Stats on IVF success after Laparoscopy & range of times before Endo returns?
Severe pain, endo mentioned
