Trying for a baby with stage 4 endo - Endometriosis UK

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Trying for a baby with stage 4 endo

becca_bee
becca_bee

Hi everyone - I’m hoping for some advice /positive stories of getting pregnant with endometriosis.

At the end of last year I was diagnosed via laproscopy with stage 4 endo, as well as a very large fibroid. Although I’ve always had painful periods, particularly in my teens, I wasn’t expecting my endo would be as extensive as it is and it came as quite a shock. I was advised by the consultant that I try for a baby immediately as the likelihood is I’ll need a hysterectomy in the future. She did say that my fallopian tubes are clear at the moment and my ovaries are normal and endo free, which is good news. However she called me ‘gynaecologically complex’ and said I might struggle to conceive (she also told me to cheer up ‘because it’s not as if you’ve got cancer’ which is correct but not entirely helpful when you’re being told you’ll need your reproductive organs removed at 32 years old!).

My partner and I started trying straight after my diagnosis. I hadn’t been on the pill for a year at that point, and was taking pre pregnancy vitamins as we’d been planning to start trying early 2020 anyway. It’s only been four months but I’m already feeling disheartened and exhausted about the whole thing. Each month is incredibly disappointing, on top of painful. I think I’d probably be much more relaxed about it if I didn’t have the threat of endo getting worse each month hanging over me and my chance of conceiving naturally slipping away.

I was hoping some of you might have some positive stories of getting pregnant with endometriosis. I might have a very long journey ahead of me and it can feel very lonely when your trying for a baby and it’s not happening. I’d love something to keep my hopes up as I press on with baby making. Thank you x

55 Replies
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I am nearly two years to trying diagnosed with severe endo in January and hydrosalphinx on right side ..... I have been recommended ivf is my best chance

Run4ever
Run4ever
in reply to LCI1

i’ve just been told i have R Hydrosalpinx alongside my long standing endo. I’ve been told either chlomid for a bit or IVF but he doesn’t want to see me for 6 weeks! so i feel lost

becca_bee
becca_bee
in reply to Run4ever

I’d like to think not too much will change in six weeks. I don’t know a huge amount but I don’t think endo grows that’s fast. I hope you get some answers soon. I know how lonely and how lost feeling ttc with endo can be x

Run4ever
Run4ever
in reply to becca_bee

Thanks for your reply. I phoned a private clinic today and managed to get an appnt this evening. I’ve been referred to the ivf and endo clinic and will have new bloods done. I couldn’t carry on with my anxiety and all the questions i had

becca_bee
becca_bee
in reply to Run4ever

Amazing - that’s so quick. The constant anxiety is the worst. Keeping everything crossed for you x

becca_bee
becca_bee
in reply to LCI1

Thanks. We’re on the waiting list for a fertility clinic now. I think it might be our only chance too x

I also was diagnosed with endo and adenomyosis in Oct 2019. I had a laparoscopy to burn it off and was told I would have a small window to get pregnant before the end I resurfaced. After my op, the pain got worse and was spreading to my back and hips but my consultant said it was just the adenomyosis which can only be relieved with the coil or to get pregnant, she said try ivf or give up on the baby. The pain continued so I went for a second opinion to another dr who said I had stage 4 or ‘deeply infiltrating Endo and would need another surgery as it had also attacked my bowel. I’ve heard that traditional ivf is not as effective with women who have endo but there are other options which a naturally modified versions of ivf which can be more successful...just very expensive! If you’re ‘clear’ of the endo right now, the only thing you need to do is try until it comes back. It might be worth getting tests done to check general fertility so at least you know what you’re dealing with. You’re still young and should have a good egg reserve, I would suggest getting some help with it as soon as possible. Sorry, I haven’t been very hopeful, I guess I would also love to hear some positive stories...

Thanks for sharing what you’ve been through. It sounds like we got diagnosed at about the same time. I’m still coming to terms it myself. There are really positive stories here. I hope they help you too x

I have got stage 4 endo and I’m 31. I would definitely suggest going straight for ivf. I tried for 10 years naturally after a lap stating my tubes was clear 3 years after that my tube blocked and I had an ectopic and lost my tube. I’ve just had my second surgery in sept last year and been told I now have a small amount of adenomyosis and this worries me because this is the killer for implantation. If you can I would suggest ivf sooner rather than later if you want children. Also it’s good to get your eggs on ice because the more surgery you have and endo can make your ovarian reserve drop. Mine dropped from high ovarian reserve to average for my age in 4 years. My surgeon will not operate again now as he says he does not want to drop my ovarian reserve anymore. Good luck 😉 xxxx your young you have time but try and have a plan

becca_bee
becca_bee
in reply to Faith103

Thanks for sharing. I’m sorry to hear what you’ve been through. It’s really not fair at all. After reading your story and the other stories here I’ve booked in to see a private gyne to go over my laproscopy notes to get some more info on my diagnosis. We’re on the waiting list to see a fertility specialist on the nhs so IVF maybe on the cards x

Faith103
Faith103
in reply to becca_bee

It’s a tough journey. Follow your heart it will guide you the right way. I think what you have done is a brilliant idea to get yourself in a state where you know what is going on. You will have more of an idea how your body works. I ended up doing something similar and getting all my info from my lap and I decided to not bother putting my all into trying naturally because damage had been caused that would make it difficult for me and it’s so stressful coming on your period every month when trying. So I would rather know where I stand so I think you have done the right thing. They might suggest trying naturally for a bit which is fine but do something to relax your mind. Keep us informed how you get on.Here to talk anytime.Plenty of us on here will keep you going. Best of luck xxxx

hey just to say i totally understand and don’t mind chatting if ever you need to. i’ve just had my 4th lap for endo and have been ttc for 10 months. My coil saved me from endo symptoms and i cried when it was removed so i could ttc as i knew what was coming. ttc is hard enough without endo never mind knowing the pain and bleeding you then have to endure thanks to a negative test. Every month i say i can’t do this anymore due to the pain, yet a month later i’m still carrying on somehow. It’s great your tubes and ovaries are ok and you still have a good chance until proven otherwise. I always tell myself endo doesn’t mean infertility. I found out last Mon i have left Hydrosalpinx and i’m not coping too well with the news. Waiting for next steps but every day feels like a decade. Due on tomorrow so can’t wait for the next 7 days of hell! Anyway sorry to moan hun all i wanted to say was here if u need to chat and i am usually very positive

becca_bee
becca_bee
in reply to Run4ever

Don’t be sorry. It sounds like you’ve had a really rough time. I’m struggling to be positive myself. Today my period started and it’s been a bad one. Had tickets to a gig I can’t go to because I’m in too much pain. Pain on top of the disappointment is a killer. Sometimes I feel like I can do it anymore either, but I’ll keep going if you do. We can’t give up hope. Message me off group if you want to xx

I have stage 4 and it was put on my records that we only had to ttc for 6 months and then should be referred to the assisted conception unit so see if you can have the same. We were lucky - it only took 1 round of clomid and it was probably pcos that caused the problem rather than the endo. So it is not always a barrier. Good luck! x

becca_bee
becca_bee
in reply to rjp1403

Thank you and congratulations. I’ve not heard of Clomid - I’ll look it up x

I have endo stage 4. I had to use ivf and in my 6th go I got my miracle triplets! I have heard of ladies getting pregnant naturally with stage 4. But after one year I would be worried. See your gp as you might be able to get one free round on the nhs xxx

becca_bee
becca_bee
in reply to Missy_22

Triplets! Wow! A whole family in one go. That’s amazing. We get one round free of IVF where I live and we’ve been referred to a fertility specialist, so fingers crossed x

PM me for a positive story. After ttc for 18 months, I conceived 5 months after my excision surgery. (laps with removal in 2015, 2019) Diet, Yoga, temp tracking, reflexology, vitex, black cohosh, aspirin at various points in my cycle also may have helped. My husband and I both completely stopped drinking alcohol, which I think reduced inflammation and improved gamete quality. I was scheduled with fertility clinic 5 Feb to begin the IVF consultations- didn’t need it after all. Am now 16 weeks and have had an easy time of it thus far- no sickness or complications. It can’t hurt to stay positive and try naturally while you’re on an IVF waitlist.

becca_bee
becca_bee
in reply to KNJR4

Congratulations - this is a lovely story! We’re on the waiting list to see a fertility specialist. I’m hoping when I have an appointment letter that will take some of the the pressure off for us to ttc naturally. I’ll look up all the things you tried. I’ve not heard of black cohosh x

KNJR4
KNJR4
in reply to becca_bee

the vitex supposedly helps raise progesterone levels. some say it’s snake oil, but i think it did something for me. i took it every morning for the five months... by month 3 i found that my cycles were shorter and more regular, and i had symptoms suggesting progesterone increase. black cohosh i took daily from cd1 to cd 14 only the month we conceived. temp tracking- read the fifth vital sign and the period repair manual- amazing books that everyone should know about. i wish i’d read them both as a teen.

the reflexology- i still see a repro-flexologist who has certifications helping women with hormonal and reproductive organ issues, she’s amazing. her treatments help lower my general stress level and may help detox the liver. aspirin i only started the month we conceived, from ovulation through to when we found out. there is decent research suggesting it may help reduce inflammation- which is the main problem i think i have with endo (it isn’t on my ovaries or tubes). basically it lessens the hostile environment resulting in slightly higher implantation rates. yoga for the same reason- reduce stress and inflammation, exercise, get oxygen to your muscles and pelvic tissues.

lastly, i changed jobs to a much less stressful role- this probably helped as much or more than the excision and homeopathy.

good luck with your journey! remember each woman’s story is different (and too much googling can really make me feel hopeless). there are many more negative outcomes posted

than positive, since the positives seem to rarely revisit these boards once they’ve succeeded in their health goals. your thread is full of positive feedback! makes me smile 😊

Hi I'm 32 and as someone who was diagnosed with srage four had both tubes blocked and large endometriomas on my ovaries I wa told I had no chance of getting pregnant naturally. But my body had other ideas we stopped trying relaxed started planning holidays was booked for surgery on ovaries again and bam! I am now 29weeks pregnant, happy but still in shock even now the cyst I have are 10cm x 11cm complex endometrioma and I have a fibroid in my womb. My happy but shocked consultant is following my pregnancy as it shouldn't have been able to happen. Fingers crossed for you, the body is a strange thing ppl tell you when you stop trying and relax getting pregnant happens, for me this was the case you never know I wish you all the best our condition is difficult at the best of times so try to focus on other things and have fun xxxxccc

becca_bee
becca_bee
in reply to Lee1987

Thank you, this is such a lovely story that gives me hope. Massive congratulations to you. Relaxing is really hard right now, but I’m really going to try x

KNJR4
KNJR4
in reply to Lee1987

i totally agree! relaxation is key!!

I conceived twice naturally- had a chemical pregnancy after my first lap& conceived my daughter after my third lap. It took a longtime to diagnose my endometriosis June 2017 ( 5 years & 10 months of TTC) I’ve had horrendous periods from when they started. I don’t know my stage but my last lap (July 2018) was by an endo surgeon ( I had 3 laps within 13 months) the comment your specialist made was irrelevant & unhelpful to your situation. It took us 7 years of TTC but we got our miracle baby it can happen. Have hope it’s only that kept me going. All the best xxx

becca_bee
becca_bee
in reply to jess1981

Thank you for your story of hope. I really appreciate it and am so happy it worked out for you xx

Hi, the same for me, but I am 37 years old now. I gave up. Too much pain without progesterone. Every month was a drama for me.

It is so hard, isn't it. The main thing is to take things a day at a time and not to put pressure on it happening *this* month, every month. It is better to accept that it probably will take a while, whether it happens naturally or with assistance. Please don't worry too much about your endo getting worse every month. There's likely to be very little difference from month to month in the grand scheme, honestly.

After a long time of trying naturally pre- and post-surgery, we reluctantly went to IVF (having been told before then that it was our best chance), and it was successful. So trying naturally for 9 months post-op did not affect our chances. Hang in there x

becca_bee
becca_bee
in reply to wanwood

We’re reluctant to go for IVF too, but I know it’s a possibility it’s the only way and after reading all the stories here I think we need to get things in motion so we have that in our back pocket if ttc naturally doesn’t work.

I’m so happy to hear it worked out for you. Gives me hope x

wanwood
wanwood
in reply to becca_bee

After so many years of disappointment, once we made the decision, IVF actually was a relief and a very positive experience for us. We knew that even if it didn't work (and we were completely expecting it not to work), we were doing something that felt constructive and was something that we hadn't tried before, if that makes sense. And the process itself was fairly straightforward after everything I'd been through with endometriosis. I was very lucky, though, to live somewhere where 2 cycles were funded, and knowing this probably helped a little psychologically. x

Hi,

I was diagnosed with stage 4 endo in dec 18, I also found out I had a blocked fallopian tube after suffering a miscarriage and this is when I was given a laparoscopy to diagnose my endo and to also have the fallopian tube removed. However I have been one of the super lucky ones I fell spontaneously pregnant in April after a trip to nyc which I strongly believe made me stop focusing all my energy on becoming pregnant and this is how it happened, I welcomed my daughter slightly earlier than she was expected on the 24th of dec 19 I fully understand how you must be feeling it's the hardest journey in the world when it's all you want to happen but I hope that my story can even give you a slight glimmer of hope. I too know the pain you are going through I had to keep getting sent home from work as tramadol was the only painkiller that would give some relief from endo pain but I would fall asleep with it. I wish you and your partner all the best in your journey together and hope your wishes come true soon dont give up.

Amy

Thank you Amy. That’s a really positive story. Congratulations on your miracle baby girl, I’m so pleased for you.

Reading through all of these is giving me hope. Nowhere near ready to give up, but realise I need to relax and accept it might take longer than I’d like x

I have positive stories and would happily chat with you. I know that feeling of hopelessness and you read so much and it’s all very overwhelming but there are ways and means.

I was diagnosed at 25 and told that the window after lap was the best chance (but I didn’t want children right then!!). I had 3 laps and actually ended up having IVF because of a problem on husband’s side. My ivf doctor said endo is not the end of your chances “I have a whole waiting room of women with endo and it won’t stop you”.

I had a baby boy after 2 rounds (age 34) and just had my 2nd boy (age 37) after 1 round.

The ivf drugs are actually beneficial to endo symptoms in many cases and worth seeing an ivf doctor if only for a chat.

I’d be happy to speak with you - my symptoms seem to have improved dramatically after having baby number 1. So that’s something.

Some docs say very unhelpful things like ‘just have a baby and it will get better’, and ‘don’t wait too long’.

Panic and worry will do nothing to help you. Just plough forward one step at a time and have faith. X

becca_bee
becca_bee
in reply to EndoEm1

Thank you - this is a really hopeful story and I’m so pleased you got your boys! I need to keep these in mind on days like to day when I’m on my period, in pain and it feels like nothing short of a miracle would give us a baby. It’s not the end though and it really helps to hear stories like yours. I’ll try to stay positive and have faith, thank you x

EndoEm1
EndoEm1
in reply to becca_bee

It’s absolutely not the end. I always thought I’d that lovely IVF doctor who told me about the waiting room full of people like me and there’s always a way. One foot in front of the other x

EndoEm1
EndoEm1
in reply to EndoEm1

*Thought of that

Hiya, some nautuopaths specialise in womens health / fertility etc. And have had success. Hope this helps, and is quite a safe option.

I’ll have a look online, thank you x

Hi. I too have a story of hope! was diagnosed with stage 4 endo 20 years ago, aged 23. I had lots of drugs and laps and a full laparotomy in 2004 after which I was put on ivf waiting list. My husband and I had our first treatment cycle in 2007 and unfortunately I ended up with severe ohss. Still, this didn’t put me off- I was determined to have a baby. I gave up my good job and had another cycle - I was lucky- at that time our CCG offered three nhs cycles. This time, it worked and we had a baby girl. I breastfed fully to keep periods to a minimum and never felt as well! I wanted to use my frozen embryos and was advised to try again 15 mths later. Unfortunately this didn’t work but miraculously, I was pregnant naturally within a month. As with the first, I bled for the first four months which isn’t easy but again had a healthy baby girl. I had defied medical odds and again breast fed. A week before her first birthday, I was pregnant with my third girl- completely planned quickly so the endo didn’t have time to return. My gynae was stunned and couldn’t believe it, especially when I said I was going to try for number 4!!! Within a month, I was pregnant and again had another girl!! I knew she was going to be my last. My family was complete! Within six months, the endo was back so I was fitted with the coil which didn’t work and expelled itself. A lap, diagnosed severe endo and adenomyosis which I already knew was attached to the bowel. I spent 18 months bleeding despite being on a cocktail of injections and tablets. I always knew I would need a hysterectomy and finally in November 2018, I had the surgery and was under for nearly 6 hours removing endo. Up to now, I feel so well and have my life back. Proof that miracles can and do happen!!x

Wow! What a story. Four girls! That’s so lovely and I’m so happy for you. We only get one free ivf cycle where I live unfortunately, still it’s better than nothing and only needs to work once. Thank you for giving me hope x

I have stage 4 and one of my tubes are blocked. I have been off the pill for 18 months. I had my surgery last December 2018. I’m only 25 now. I’m kind of not trying exactly, but I have a healthy sex life and if something happens it happens. For me it hasn’t been the case. I’ve been told to have IVF by 27 if I want to conceive. They say with endometriosis if it’s been over 6 months of trying you should go to the Doctors and think about IVF.

becca_bee
becca_bee
in reply to Duckyfeet

Thanks for your message and I’m sorry you’ve had to go through all of this at just 25. We’re on the waiting list for fertility treatment at the moment. Ideally I wanted to try for a year naturally but this thread has showed me we need to go for it as soon as we can x

Duckyfeet
Duckyfeet
in reply to becca_bee

Yeah I think once you have it decided to have a child you should try as soon as possible. I wish you guys the best and hope you get your baby news as soon as possible!

hi. 😊 I've got diagnosed with

stage 4, deep infiltrated endometriosis, its on my bowel, bladder and I had a full frozen pelvis. We had our first child naturally but had no idea about the endometriosis, that came to light when I was rushed for emergency surgery on a ruptured appendix - it was fine but the large chocolate cycst had ruptured and again it hadn't been picked up even though we were by that point seeing the fertility consultant. I won't bore you with all the complications but we got told ivf was the only option and due to the state of me they didn't think it would work. We took some time to think about it and decided we'd regret not trying and our little miracle is currently teething and fast asleep on me so it can happen ( was our first round and we have 9 in the freezer). Have you tried the endometriosis diet? I found it helped with finding the triggers, there is a book we had i can't remember it's full title but its something along the lines of endometriosis nutrition and fertility, if you'd like the details let me know and I'll find it. Xx

Hi, yes. If you can find the book I’d definitely be interested in the title. Such a lovely image of you with your little miracle sleeping on you as you write. I hope one day I can give somebody else hope like you’ve given me. Thank you x

hi. Sorry for the delay we've been away. The book is endometriosis - a key to healing and fertility through nutrition. It's a bit full on but gives alot of detail and for me made alot of sense. Hope you're comfortable and keeping well. Xx

Thank you x

KNJR4
KNJR4
in reply to Tillyfloss

was it wendy laidlaw’s heal

endometriosis naturally? i really liked this one. her writing style was easy to read - it was as if she were standing there chatting to you, and had lots of good advice.

becca_bee
becca_bee
in reply to KNJR4

Thank you I’ll take a look x

Hi I’m 32, and I’ve had Endo for over 4 years. I got told I wouldn’t be able to have children. It was the most depressing and disheartening news ever. I was then put on a waiting list for surgery. My partner and I decided to get my implant removed 2 months later I became pregnant which was a beautiful surprise as weren’t actively trying. Since I had my daughter, it wasn’t long after the endo and it’s horrible symptoms returned with a vengeance I had surgery last year but it hasn’t helped. The only good thing from all this is my baby girl which Im so grateful for. I really do understand where you’re coming from, there have been times when the pain hits me so bad the only thing that got me out of bed was that I had a child to look after. I pray that things work out for you, don’t give up.

I kinda opposite story my husband had issues so had to get ICSI ivf and when I got my c section they found endo which is now needing treated I suspected it for years but they said they were surprised I even managed to have kids so definitely try go for ivf as the waiting lists are long I am now 35 my son is 2 and he was frozen for 3 years firstly but it’s worth trying to get an NHS referral u have to be trying for 1 year too but they may also take that u have endo into consideration but my hubby has a zero sperm count I had cysts and endo and we had rubbish quality eggs on transfer day and it worked 1st time so miracles do happen so try not be disheartened xx

Hey hun, it took me 6 months at age 34 with endo, and i had a healthy pregnancy. Now at age 40 i need help to conceive because my tubes have slowed down, so keep on at it for a year and if nothing happens go and get help, dont wait until its too late. Hopefully it will happen for you naturally, it usually takes longer to catch with endo so dont feel disheartened xx

Hey becca I just read you’re post and felt compelled to reply. I felt as if I were re living my experience through parts of you’re experience. I am living proof that you’re time will most certainly come. I now 6 years later suffered with Stage 4 endometriosis am a mummy to 3 wonderful princesses who although I had began my failed IVF journey managed to have all 3 naturally. Don’t lose hope and I know it’s so much easier said than done but be positive. I more than anything wanted to give you that positive story you were looking for because miracles really do happen when you least expect it.

Good luck,

becca_bee
becca_bee
in reply to H4RLEY

Thank you - these are the miracle stories that I keep going for. I’m at a low ebb at the moment, but I know it will all be worth it if I manage to get our baby x

Hi darling,

I know how you feel, becasue after my third operation finally the doctors told me I have to get pregnant as soon a possible! As if it was easy!!! They very well know that it’s almost impossible to get pregnant naturally and instead of giving you such “relieve” by saying you still young! Which is true but stage 4 endometriosis it’s the most severe one and affects profoundly your reproductive system!!! The doctors should refer women that wish to have children to a reproductive centre so you can be advised of all the possibilities to get pregnant, IVF it’s our last option... I have tried to convive naturally for over 2 years and I couldn’t, I have had 4 laparoscopic procedures and had been invasive becasue all my reproductive organs were stuck together with endometrial tissue! Two massive cysts one on each ovary, also my rectum was filled with endometriosis and still the only advices from them was “try to get pregnant” I read all these stories and I get extremely frustrated! Why can’t they just give each of us the proper advice so we can live better lives and manage our symptoms, the minute we are diagnosed they should ask us to froze our eggs for future IVF procedure in my opinion.... now after 5 years of pain endurance and trauma I decided to go abroad to get treated, and within two month from seeing the first doctor I already went under ivf treatment, I didn’t have enough eggs dues to the extensive endometrial history, so basically endometriosis kills your eggs ... 🙁 the doctors retrieved two eggs and only once survived! But that only one became and embryo and now I am waiting for a pregnancy test... fingers crossed 🤞 having said all of the above the IVF treatment is extremely hard physically and mentally but if you with all your heart want to have a child this is a considerable option.

All the best 💛

becca_bee
becca_bee
in reply to PaoPetite

Keeping everything crossed for you!!! It’s so so hard and maddening at the same time that pregnancy is something presented as so easy for most people and yet seems impossible for us. Do keep me updated if you want to. I hope so much you get that positive test xx

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