Stage 4 Endo what next?

[woolston27]

Hi all, I am 36 and I was diagnosed with Endo stage 4 which is attached from rectum to bowel and my left tube and ovary is destroyed, the right buried. I am.awaiting an appointment with a consultant in Portsmouth. I have joined a.support group which has been helpful but I am feeling overwhelmed by the decisions that I will have to.make now. I.haven't had any children yet and that was.the plan before this diagnosis. I am.stuck! Do I go on to have many corrective surgeries, meds, struggle with ivf and the emotional strain on our 3 month old marriage. Do I have a hysterectomy and accept that I won't.have my own children. I am so scared.of ending up with a colostomy bag due to the damage in.my bowel. Help! X

[SparklyT]

Hey there, I'm in a very similar situation to you. I found out in early Nov that I have stage 4 endo, adhesions to bladder and bowel, left tube severely damaged and right tube kinked. We've also been trying for a baby for nearly 2 years. I'm 33 and experience very minimal endo pain.

I know how much of a shock this is to you. After my first lap my surgeon suggested I go and see a private fertility and endo expert (PM me if you want his name). He was amazing and gave me 3 options

1) major surgery to remove all the endo but there would be a50% chance it would return

2) straight to IVF

3) have another lap to remove my left tube, giving me greater chance of success at IVF as the liquid from my hydrosalpinx would corrupt the womb environment.

I've opted for option 3 and I'm having the lap next week.

Please PM me if you have any questions. I've done a lot of research and had some great help on this forum, especially from @YellowRose. I'm more than happy to help x

[woolston27 in reply to SparklyT]

Thanks for your reply.

It sounds like you are a lot more clued up than me, which isn't hard as I was given my diagnosis 3 weeks after laparoscopy by reading the letter sent to the consultant. Noone apart from some lovely ladies in a support group has told me the options.

My concern with going straight to ivf is i would need to stop the pill which would result in my excrutiating pain coming back

We really cant afford private treatment....although so many ladies mention using that to speed things up.

I feel stuck between a rock and a hard place!

Xxx

[Shehulk]

Hi, I am in a similar situation than you, I am 36 and I was only diagnosed this year with stage 4 recto vaginal endo. For me it all started a year ago when I came off the pill to ttc. In the space of a year I went from 0 symptoms to being in pain daily. I had a laparoscopy 3 weeks ago where I had extensive endo removed from my bowel, ovaries, tubes , pouch of Douglas, abdominal wall, etc ( the op lasted almost 6 hours!). I was quite scared about the op initially, specially about ending with a colostomy bag but my symtoms were so bad at the time of the op that I could not wait to get it done. The op was a success and they managed to remove most of the endo and even if it is only early days I can already feel the difference. After the op I was given 2 choices, to try naturally for a while or to go straight to IVF. We decided to go for the later. I think having the op for me was the right decision as I was in so much pain before hand. Having it removed from your bowel and the risks can be a scary thought but worth it if you are suffering. Hope everything goes well for you whatever decision you choose to take and feel free to message me if you have any questions x

[woolston27]

Hi shehulk,

its almost the same story for us.....

I stopped the pill about 9 months ago to ttc and I got ill as soon as I came off the pill.

The same thingintense I couldnt stand up and was often sick. It happened 4 years ago when I changed the pill. I have problems with my bladder, bowel and my hormones are all over the place. the pain was so I

I had my lap 4 weeks ago and they didnt do anything corrective just referred me to another consultant.

Did they treat yon at your first lap, or did you have another when under specialist?

Thanks x

[Shehulk in reply to woolston27]

Hi woolston, I was initially diagnosed via an MRI, I had large cysts and and a large module

[Shehulk in reply to Shehulk]

Posted too quickly

[Shehulk]

I was posting on my mobile, and somehow it deleted my full repply.... Don't know what is going on. What I was trying to say it is that my endo was removed during my lap, as it was clear from the MRI that I had endo. The removed most of it, including the endo in my bowel. The op was long, almost 6 hours but the recovering has been better than I expected so far. Even just a few days after the op I wAs already in a lot less pain medication than before. Now 3 weeks after I am only taking pain relief once a day, before I go to sleep. Also, it might be weird to say but I can feel it gone, before the op I was in pain daily, mainly horrendous back pain, like something was pushing on my tailbone, that is completely gone. I knew there were risks in the op, but I am happy I went trhough it, my quality of life before the op was not good and because it happen progressively it didn't even hit me how bad it had got until it was gone. It is too early to talk about the long term effects of the ops but I think it was the right decision for me, living in pain daily it is not right and I belive that the op was the best way to improve that. I was lucky enought they I was referred to an endo specialist centre straight away. Is the place were you are being treated a specialist centre? X

[woolston27]

I have been referred to christpher guyer at portsmouth endometriosis centre. X

[Dream_in_pink]

Hi there, so sorry to hear of your diagnosis It's really difficult to make decisions and so brilliant that you have found the support group. There is a lovely endo nurse in Portsmouth - I think her name is Debbie? Have you also had chance to meet her?

This is such a personal decision and it's so important that you work out what is best for you.

I am Carol and one of the trustees at Endo UK & a support group leader - I am the lady who did the TED talk on endometriosis and had several bladder/ bowel ops for severe endo. I don't work any more and so help out at one of the centres one day a week on research. It's really interesting and has helped me come to terms with what endo has done to me. I hope, one day, that there will be more information (which only comes out with years and years of research and follow up) out there to help women.

In terms of severe endo, the type of surgery done by Chris Guyer and others like him (excision surgery - cutting out parts of organs damaged by endometriosis) shows that this improves fertility rates. Fertility rates in women with severe endo are sadly much lower (pre surgery) than with milder endo - although some women still conceive with very severe endo (there is not enough understanding on this yet) and also some women with mild endo struggle with fertility -it is very individual. Post excision surgery for severe endo, it has been suggested that fertility rates can rise as high as 50% but there are so many factors (age etc) that affect this - and also, the rates do remain below the average for women without endo. I have personally seen quite a few ladies conceive post bowel surgery - these are moments of pure joy that I treasure very much as a support group leader as every baby born to a woman with endo is special.

My own journey ended with a hysterectomy (in my early 40's) - I knew I had exhausted any possibilities of ever being a mummy and it was the right thing for me. It was then that I found I had adenomyosis (endo in the lining of the womb) - which cannot be diagnosed definitively without a hyst unfortunately. I had bowel surgery in my mid 30's - this gave me my life back and enabled me to work for some years (bladder and ureteric endo kind of floored me unfortunately).

I hope one day that there will be some better research as to rates of adenomyosis/ sub mucosal endometriosis in women with endo so that we can have better info on which to make a decision regarding hysterectomies. It isn't necessarily a solution for endo but for certain women (myself included), it may help if there is adenomyosis or sub mucosal endo.

Personally, when I have a hard decision to make, I follow my heart. It isn't easy. Talk to the people you love, make sure you have every piece of information you need and do what you feel you need to do. Take time to do what you believe is the best course of action for you.

I wish you the very best of luck indeed, take care and please do get in touch if there is anything you need.