Stage 4 endometriosis post surgery, chanc... - Endometriosis UK

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Stage 4 endometriosis post surgery, chances of naturally conceiving?

Hopeful1s
Hopeful1s
32 Replies

Hi community, I saw my gynaecologist today who has said that our chance of conceiving are really low since I am classified as stage 4 endometriosis. She said our chance each month is less than 5%, whereas normally fertile couples are around 10/11%. She told me there is no evidence that in stage 4 endo patients, surgery will improve chances of conception. This has only been shown in stage 1 or 2 patients. This was news to us and left us feeling very deflated and upset.

I feel like I get told different things by different people. My surgeon in my post op appointment did not say this and encouraged us to try getting pregnant naturally. It has never been mentioned before about the surgery having no impact on the fertility issues at stage 4, although I may have read this in some studies at some point (there's not many).

The gynaecologist pretty much said IVF is our only option since we have been trying to conceive for over 2 years. Is this true? Even though I've had surgery to deal with my endometriosis and remove cysts, and I have regular cycles, ovulating each month? Why are our chances so low? Just feel we get knocked down every time we are trying to feel positive :-(

32 Replies
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Rehanat

Please don’t get deflated- I don’t agree with them saying ivf is your only chance and I am living proof otherwise.

I was diagnosed with stage 4 endo in 2015, I had a failed cycle of ivf in 2016 and ended up conceiving naturally in March 2017 with a 10cm endometrioma on my right ovary and extremely bad endo all over my bowel, bladder etc.

It can happen but may just take longer that’s all, I know how hard it is to stay positive and keep trying but please do!!! Xx

Hopeful1s
Hopeful1s
in reply to Rehanat

Also my age is a factor, I'm 37. How old were you when you conceived? She said endometriosis will affect the quality of my eggs. At this moment I just feel so stupid for letting my guard down and allowing myself to feel like this might actually happen for us like normal people. I'm angry with my body for not working properly and I feel so out of control that I can do nothing about it. Just thinking about IVF is overwhelming. I never ever thought that would be me. I just don't know if I can do it :'-(

Rehanat
Rehanat
in reply to Hopeful1s

I was 37 aswell, it took us 2 1/2years in total to conceive and I am trying again and almost at the 2yr mark.

There are supplements you can take to try and help egg quality, coq10 and if u reduce dairy, wheat and sugar this helps endo too(I tried it and it is sooo hard).

Endo is something outwith your control but it’s up to you how long you want to try for before giving ivf a go, there is no guarantee with ivf either .

Hopeful1s
Hopeful1s
in reply to Rehanat

Thank you Rehanat, I have cut out foods in the past to help with my endo symptoms which have helped. I know IVF is no guarantee which is why it scares me about going through such a big process, perhaps for no gains? It gives me comfort and reassurance that you were able to conceive at my age naturally, thank you for sharing. I hope you will conceive again soon.x

Afrohair

I really don’t believe this purely because I’ve not been diagnosed but I know my endo could be near this stage because it affects my bowl and I can feel it on my vaginal area I have conceived but it did end at 13 weeks I don’t believe any more the endo caused it I think I have another problem which needs accessing there are lots of stories of stage 4 pregnancy if it was me I’d find someone who would listen possibly get someone private who can then refer you on nhs I’m really sorry you have been through this I feel I’ve got it all to come but I’m not going to allow it I have an appointment on Monday if I get no answers I will surely ask a private consultant who also specialises in fertility they are the experts

Hopeful1s
Hopeful1s
in reply to Afrohair

Goodluck with your appointment on Monday, I hope you get the answers you are looking for. I'm really struggling with this news today. I will look at getting a second opinion but I do think quite highly of this gynaecologist, she spotted my polyp on an ultrasound that my surgeon didn't pick up on a CT scan. Even the surgeon commended her for picking it up.

Afrohair
Afrohair
in reply to Hopeful1s

I understand I would struggle to even me as a reader I’m struggling because I know I’m going to get an advanced diagnosis but like I said I conceived and I think my endo is bad because I think I’ve had it unknowingly 3 years it will be going to 4 years now my symptoms have shown up

Tillyfloss

hi. How are you? Endometriosis is a roller coaster ☹ . Is the specialist you have seen an endometriosis specialist? Do you know where the damage is? I have stage 4 deep infiltrated endometriosis and it's all over my bowel and bladder to and has caused alot of problems since I was accidentally diagnosed in 2016. We were told naturally conceiving with such bad endometriosis is very rare and for us even ivf was a long shot but its one we took and are little miracle has been up since 4:30 and has just gone back to sleep in time for me get up !! I always said I wouldn't do ivf but for me it wasn't that bad compared to all the endometriosis surgery and treatment it was easy. I really hope you get your little miracle. Xx

Hopeful1s

Hi, yes I'm ok thank you. Hope you're well too. I suppose when you put it into perspective like that, if I can get through all the endo and surgery then I should be able to handle IVF. I know I'm probably strong enough and I have an amazing husband supporting me, I'm just feeling sorry for myself that we have to go down this route. Its just now how I imagined it would be. Its so lovely hearing positive stories of your miracles, thank you for sharing.x

Mussya

It could be that there's no evidence because no research was done yet...

[This post has been edited in line with Endometriosis UK's code of conduct]

Also, ivf is not the end of the world :) it's very common in other countries (I'm from israel and tons if my friends & family had it).

Good luck!

Hopeful1s
Hopeful1s
in reply to Mussya

You're right, there is simply not enough research, we know that. I mean the hospitals don't even follow up on a case by case basis in order to gather more data post surgery.

Thank you for reassuring me about IVF, its just not the route I expected to go down but I'm starting to realise its a reality for alot of women nowadays which makes me sad.x

FingersXssed83

My endo specialist said after surgery on her stage 4 patients, 40% of them achieve pregnancy in a year. I don’t have stage 4, but I know someone who is and has conceived twice (naturally and IVF) and now has two kids. Try to keep positive OP, miracles do happen xx

Hopeful1s

Thank you for reassuring me with these positive stories, it's what I needed to hear. I'm hoping we conceive naturally before we begin the IVF process. I need to investigate my options and start the process which could take a couple more months. Fingers crossed for a miracle to happen.xx

Lyns88

Hey❤️ I'm in your boat too. Had laparoscopy September, both overies covered in cysts and bowel stuck to other organs. Stage 4,my surgeon actually described it as very messy and asked me how I had managed to cope for so many years.

We have been told to keep trying to conceive and if it hasn't happened in 6-9 months IVF is our next step. I know how you are feeling , and how hurting it can be. Did you happen to get Ur tubes checked during surgery? I'm like you I ovulate every month (trust me I still bloody feel it) and I'm regular like clockwork.

Its draining, frustrating and blooming hard to stay positive. X

Hopeful1s
Hopeful1s
in reply to Lyns88

Hey, your endo sounds so similar to mine. It was pretty bad in there and there was a 10cm endometrioma. Tubes and everything is fine, that's why the surgeon sent us on our merry way to try to conceive naturally.

I'm so desperate for my body to work normally, I can't come to terms with the fact this might not happen naturally.

I had a scan 3 months after my surgery and my ovaries were already looking like they were stuck again. It grew back so quickly. The gynaecologist assured me that this was normal and not to worry but my head immediately went to.. this is never going to happen for me is it?

I can see all my results are good, I have a good AMH result and the gynaecologist said I would be considered a good responder for IVF treatment. Its just like a runaway train, and I just want to get off :,-(

Lyns88
Lyns88
in reply to Hopeful1s

Your chances definitely sound good regarding IVF working in your favour. I don't fear IVF (I don't think you should either) I was extremely surprised when I actually started to speak out about my condition the amount of people that has had kids through IVF is surprising (close friends and work colleagues)

It's hard not to beat yourself up and feel 'why is this happening to me?' I have been with my partner from I was 15years old,.am now 31 and not once has he complained or made me feel like poop over all of this- he is the one every month that rubs my back till I get ease, gets me endless hot water bottles, dries my tears on them bad Shi**y days and goes to every bloody appointment with me. I totally get you! It feels never ending. X

StefaniaJW

It highly depends on the skills of a surgeon. Very few surgeons are capable to treat stage 4 endo effectively to preserve fertility, probably less than 6 or 7 in the UK.

However if you go with one of them, your chances might be as high as 50% a couple of months after full excision assuming both tubes were saved.

If your tubes are completely damaged and need to be removed during surgery, you'll have 0% chance and will have to undergo IVF.

So it depends on the surgeon and the organs involved with endometriosis

Hopeful1s

Hey, I went to an endo specialist centre in London so I felt I did my best to get the best results. Also agreed with my surgeons beforehand that the main priority was to preserve fertility. From their perspective surgery was a success because we achieved what we set out to do. Both tubes and ovaries were saved and I'm ovulating every month, with a regular cycle. That's why I was so deflated when the gynaecologist basically said to do IVF and don't waste anymore time trying to conceive naturally. So bummed right now :'-(

StefaniaJW

If you have to choose between listening to your regular, non-specialised gyn or your trained excision surgeon, I would choose the latter. Relax, don't even speak to your gyn to avoid upsetting yourself, get your vitamin D tested beforehand and supplement it, start taking pre-conception supplements and try naturally for at least 6 months.

Then maybe start considering IVF.

But if surgery was successful and you feel much better now and periods are not painful, it's a good sign endo was excised correctly.

There is just one trained endo excision surgeon in London working at Princess Grace. I had no idea there were more. I am happy surgery went well

Poppsicle

Hi I disagree with what your consultant said as mine said the opposite, that surgery definitely improves chances. I had stage 4 but wasn’t on ovaries and had excision surgery. Tried for 6 months but was impatient so went to IVF and worked first time and now have a little boy.

I think if we had tried longer then we would have had a chance though.

However, my personal advice to you would be go straight to IVF or at least get referred now and try naturally in between if I were you. It’s a shock to realise you need it at first but it’s the quickest and best chance for you to conceive. It’s really not that bad and bypasses all the issues endo can cause. Then you might also get some frozen embryos to preserve your fertility to have the chance to even expand your family in the future (like we have).

Good luck and remember it doesn’t matter how you get there if you get your much wanted baby in the end!

Hopeful1s
Hopeful1s
in reply to Poppsicle

I think this is what I needed to hear, when you say the word shock. I was shocked about my endo diagnosis and was just coming to terms with it (barely) and now this shock. You put it perfectly when you said no matter the journey as long as you get there. I think I was focusing so much on how perfect and normal I wanted this journey to be, I kind of forgot that its about where I'm trying to get to that matters. I just hate that my husband has been having to go through this with me, and he doesn't ever complain. I feel very responsible for not being able to get pregnant. The gynaecologist also said to not wait around, do IVF, and said based on all my results she's seen, I would be classed as a high responder.

Poppsicle
Poppsicle
in reply to Hopeful1s

Exactly and now I just feel incredibly grateful for IVF and what it’s done for us and I don’t care we had to do it. In fact, in some ways I feel better off as I know we have some frozen embryos for the future so I’m in less of a hurry to try again right away! My endo was pretty extensive as my surgeon put it all over my pouch of Douglas, rectum etc and I also had PCOS but we still had great results from IVF.

You really should not feel responsible. You didn’t ask to have this horrible disease!

Xx

Hopeful1s
Hopeful1s
in reply to Poppsicle

True, we (none of us) didn't ask for this horrible disease. We're in the 3rd month of trying and I think it will have been 6 months by the time we figure out what IVF clinic and options we go with. I need to do my research. Any tips on selecting a good clinic?

I'm still clinging on to hope of conceiving naturally.. after surgery I was so full of hope it was going to happen for us.

I guess whatever is meant to be for us will happen, and all that counts is the end result.

ELISE2

I am so sorry to hear that! They haven't said anything to me about what stage I am, they never give the information that is useful to us at the start of all this.

I looked into freezing my eggs as the NHS won't do it. But I am a student and do not have £8,000 laying around. I would suggest speaking and looking into anything with information, then write it all down so you know as much as you can. x

Hopeful1s
Hopeful1s
in reply to ELISE2

The surgeon said to me they don't use the stage system to grade endometriosis anymore but as I was asking she said a 3 going to 4. But my gynaecologist who is super trained in reading ultrasounds kept referring to me as having stage 4 endo. I don't think its an exact science. There is so little research in this area, hugely under funded and very few trained or experts in the field.

If your AMH is compromised then maybe freeze your eggs, maybe get some advice from a endo specialist centre? £8k is alot of money, but maybe you could crowdfund it?

Afrohair
Afrohair
in reply to ELISE2

Is it really that much for egg freezing I’ve heard people get it for £750 a year

Minky1985

Hi Hopeful1s

I am so sad that you are going through this. I know how difficult it is believe me.

I was diagnosed with stage 4 endo via a diagnostic lap in 2016. The DR got rid of whatever he could and asked I us to TTC naturally for 6 months and to come back if nothing happens. This was after we had been actively trying since April 2013.

We ended not going back after 6 months and continued to try until last year January when we decided that we wanted to try IVF. But before they attempted IVF I had to do another lap, the results came back 10 times worse with the endo having spread to my diaphragm and bladder. Dr said he managed to remove most from my ovaries and that my left ovary was stuck and had to be fixed as well. Luckily they were able to save it.

I did the surgery in Feb and had an appointment about a month later for a check-up. They found a cyst, had to go on oral contraceptives to dissolve it and in April we started IVF. I didn't respond so well and they only manage to get 4 embryos and 3 fertilized but nothing implanted. We were gutted and basically gave up. We couldn't afford more cycles and I dont think I would have been able to cope with another 1 anyway.

I really completely gave up on it all and handed it to God. I was so tired, disappointed and realised that I had done everything in my power, Drs, herbs exercise etc. At that point prayed and asked him to please give me a sign so I can accept it and move on. I didn't get the sign I expected and opened my bible on judges 13. After reading it i found some peace. The very next month I was almost 10 days late before I had the courage to test and when I did test I couldn't believe it. We got our first positive a month after failed IVF. It was confirmed a spontaneous pregnancy. So yes it is possible.

I can't say what helped but I hope that my story gives you a little hope. I should also mention that I am 34.

Good luck in your journey!

Hopeful1s
Hopeful1s
in reply to Minky1985

Hello, thank you so much for sharing your amazing story, what an amazing miracle to happen! I know up to now my faith has kept me going and I understand that if we are blessed with a child, it will be down to God.

I really appreciate you being so vulnerable in sharing your story of loss and almost giving up.

Please keep all the ladies still waiting for their miracles in your prayers.x

Minky1985

I will definitely be praying for all of you guys!!!

ourmolly

I had severe problems. However, I had my son at 20 and 18 months later I had my daughter. However, after having my daughter I had severe problems as soon as she was born, including rectal bleeding with clots, my periods were horrendous, severe pain with heavy periods including large blood clots. My issues kept getting worse, until I had to have an emergency hysterectomy as I was not allowed to have another period because it was too painful to pass the blood and clots. My surgeon would not remove my ovaries because I was only 28 years old. I have had rectal bleeding for over 40 years, plus I now have a rectal ulcer.

Hopeful1s
Hopeful1s
in reply to ourmolly

I'm so sorry to hear about you have been going through, it sounds like you have suffered so much :-(

How have you coped suffering like this for so long?

ourmolly

To be honest it has not been easy. It has totally affected my life. Being medically retired for 25 years due to severe back issues, along with the problems I have had since having endometriosis has been difficult to live with, I just had to accept it, as I had to live with the situation. Not easy.

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