Hi, 24 and just been diagnosed with DIE of the recum (5cm from opening) and large endo adhesions on uterus, bowel, bladder and ovaries and obliterated pouch of douglas.
I haven't seen a consultant yet for surgery options - just wondering if anyone had similar diagnoses and what they went through?
I haven't had kids yet and don't know if I can now??? Did anyone with similar endo have a stoma? Thought of needing a stoma kind of terrifies me.
Any advice or personal stories are so welcomed, feels very isolating when no one around you truly understands how it feels...
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NevBean
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I've had pretty much the exact same diagnosis 6 weeks ago. Just had letter from specialist clinic requesting an mri. Like uou, would love to hear from people who have had surgery and what it entailed etc.
Hi, sorry to hear you are going through so much at such a young age . Have you had surgery before ? . I’m just going by my experience having endometriosis since 17 and several surgeries , I have had two children . My last surgery was a total hysterectomy due to many different things going on one being DIE but even then I said no initially to hysterectomy and they were fine with that so I don’t think you will need to worry about hysterectomy.i am 48 now .I had a bowel resection and dissection and didn’t need a stoma try not to worry to much on that one they do have to warn you of it .i had a multidisciplinary surgery urology and bowel surgeons involved the surgery was over 8 hours long and other than menopause the recovery was fine .
I hope you get to have clarity soon and speak to consultants to ease your mind . Take care x
Thank you for this. I have only had a diagnostic lap where he did nothing and said he will need a bowel surgeon and probably urologist with him to excise it all. I haven't seen him for a follow up yet as that was only 2 weeks ago. Fingers crossed it won't be as life deleting as it feels right now
Hi there, I have stage 4 endo on my sigmoid colon, bladder, pelvis. Mine was diagnosed via MRI following a colonoscopy.
I currently have a temporary stoma. My endo surgery was put on hold so I could start IVF. Ironically the week we were due to have the consultation to start with the clinic I had a bowel obstruction and had to have emergency surgery. This surgery has left me with a stoma. It’s been really hard to process as it all happened so quickly BUT I’m adjusting. It’s not what I would have wanted but it’s equally not so bad. I’m on the mini pill to stop my periods whilst I recover. I’m only 4ish weeks post surgery but it’s ok. I’m waiting for a plan of the next steps as ideally I’d like to do the full endo surgery now before IVF. But I’m need a colorectal and urologist with my endo consultant for the surgery.
Im not sure if that helps but I wanted you to know it’s not so bad. It’s an adjustment and with Endo I think we are used to those!
Hey, hope you don't mind me jumping in here but this is the first time I've come across someone in a similar situation as I'm going through. I've got endo on the sigmoid colon and ileo-cecal region so need two bowel resections but I've had a few failed IVF rounds so want to start more fertility treatment too. I've been advised that I might get a bowel obstruction if I don't have the surgery soon, which I want to avoid. I'm sorry to hear you had a bowel obstruction and hope the stoma isn't too stressful, and that you are adjusting okay. If you don't mind me asking, are you going a full bowel resection next? And do you know how long after you can start IVF?
I don’t think I’ve found anyone in the same position either!
I was told I’d need a bowel resection of the sigmoid not a full bowel resection. But that when they do the op they will reverse this stoma and I may need an ileostomy temporarily. Please do the surgery, to save you the mental shock of the bowel obstruction. I have a consultation on 29/5 with the colorectal team and my endo nurse to discuss the next steps. It will either be delay the surgery, keeping the stoma for now and do IVF. Or surgery and delay the ivf. The reason I was told to do the ivf first in the first place is that recovery after major surgery like that can take 6months minimum.
I’m 37 so I don’t have time on my side when it comes to IVF. Can I ask you whether the endo was the issue with the failed rounds? How are you feeling about it all? It’s a lonely position to be in as I feel like I’m not only dealing with the infertility but the Endo and mess it leaves!
I've found it really overwhelming at times and definitely isolating, there isn't really a straightforward option when it comes to endo! I had a laparoscopy in October for the ovarian endo so I didn't really expect to need more surgery so soon. My consultation with the surgeon for the resection isn't until 15/07 so I'm planning to do an IVF cycle next month and to freeze all embryos. At least it will hopefully give me some security for after the surgery/recovery etc as like you said it's a long recovery period.
Yes it's the endo that's impacting my IVF. I respond well to the stim meds and usually get 10-12 eggs but because of the endo the quality isn't great so I never get more than 1/2 embryos. My clinic are trying different medications etc. so hopefully I'll get a better result next time but the endo definitely makes it harder! How are you feeling about starting IVF?
Wow have they said why you are in a position why you need another op so soon? Did they miss it or it’s grown back so quickly?
This is my worry they seem to think doing the IVF with all of my endo is better than the surgery to remove it first. I will probably suggest collection and egg freeze before surgery if that’s an option. I will know more about how long they want me to have the stoma for at my appt. You can go through IVF with it so that might be there suggestion. We were about to start IVF when the blockage happened! I’ve made peace with IVF and I’m happy that I have the opportunity to try it. Shall I update you after my appointment on 29/5? It might give you an idea of options.
They only found the bowel endo during my last surgery! And it was an endo gynaecologist that found it so he didn't have the expertise to operate on the sigmoid colon/ ileo cecal. So then I was referred to an Endo Clinic and now I'll finally get to speak to the bowel endo consultant in July.
That would be brilliant if you could update me after your appointment, thank you! My surgery appointment feels very far away. That was really unlucky timing with your bowel obstruction, I hope you get a clear timescale for removing the stoma.
It's a tough decision re removing the endo before/after IVF. Also I guess it depends on if they think it will have any impact on IVF outcomes. Because the recovery from the bowel surgery is very long, I don't really want to delay IVF, and also like you I'm nearly 36 so time is not on my side. But I also don't want to risk the endo getting worse. The IVF will probably exacerbate it too! So I want to get the surgery scheduled asap but because my appt isn't until July it makes sense to do the IVF first I think. All the best with your appt, hope you get the advice you need on all the options to make an informed decision! x
That’s why they need better imaging on scans to detect endo before surgery. I’m glad you have an appointment coming up even though it’s been a long wait.
I just wanted to update on my consultation this week. It went pretty well. They are scheduling my stoma reversal, sigmoid removal, bladder and pelvis endo removal for August. I may or may not need another stoma temporarily depending on if there is enough healthy rectum. I have to have a test of my bladder capacity called a cystoscopy and a colonoscopy before the surgery.
We have asked about the possibility of an egg retrieval before the surgery and waiting for the clinic to come back to us. It’s a long shot but it’s worth asking.
It will be a long surgery but I’m glad I’m on the path now as it’s so hard not having a plan. The colorectal surgeon said it would be around 12 weeks recovery.
I'm good thanks🙂Thanks so much for the update. I'm really delighted to hear you had such a positive consultation - and that you can get all the surgery done in August, that's so soon! The advice you got on getting another temporary stoma is good to know - I've had two very opposing views from consultants on whether I may/ may not need a stoma after the surgery so I guess I'll see what the colorectal surgeon thinks in July. It's also useful to hear the estimated recovery time. Did they say anything about diet during recovery - I'm assuming you need to eat a special diet afterwards?
Sounds like they are really being really thorough in checking everything before they operate. It will definitely be an extensive surgery but it's great to know the next steps, there's nothing worse than being in limbo! Thanks a mill for sharing your advice. Will let you know how mine goes too.
Hope you get good news from the fertility clinic on the egg retrieval. I've just decided to go for it and to do a freeze all cycle this month as my consultation is a few weeks away and the surgery will probably be a few months after that. The clinic have agreed to go ahead so I'm starting stimulation meds next week. Fingers crossed 🙏🏼
I’m just preparing my mind for another stoma, just in case. Il probably know more after the sigmoidoscopy. It feels a little overwhelming to know il have another big surgery soon but I’m grateful it’s happening and I’m moving forward. Yes please let me know how your appointment goes.
How have you found the IVF process? Were you on a long or short protocol?
Yes at least the sigmoidoscopy helps provide a clearer picture. I was actually sent for a sigmoidoscopy/colonoscopy a few months ago but they couldn't do it because my sigmoid colon was too narrowed from the Endo so I had a CT Colonography with contrast instead which showed up all the Endo patches. I'll report back once I have my appt.
The IVF medications are fine but I find the process very mentally draining. For me, the first couple of rounds were trial and error to try to find out what produced the best results. I do have a friend with Endo who got pregnant from her second round though (first embryo transfer) so everyone is different! I tried the long protocol for my first round, that didn't work well as I got zero embryos. I've used the short protocol for my 2nd and 3rd rounds with ICSI which works better and I'm doing the short protocol this time too for my 4th round. It's a rollercoaster but it's exciting to start the process!
yes that’s what happened for me, they used CT imaging in the end. I think as they just want to check the distance from the rectum to the sigmoid we are going ahead with the sigmoidoscopy.
That’s good to hear as I was worrying about the hormonal fluctuations. There is always hope it can work, it’s just more challenging with Endo I guess. We only get 1 free round of IVF where I live so we will have to pay for further rounds. I’m hoping we can get a decent amount of eggs/embryos for other transfers. My AMH is low and my last AFC scan was 12 so I’m trying to be realistic that we might need a few rounds.
Well you never know, hopefully the free round is the one that works! I don't qualify for free IVF as I'm in Ireland and the funding is super limited here. But my health insurance covers some of the cost at least for the first couple of rounds. Endo does make it more complicated. I actually changed to a clinic with more endo experience after my second round because I felt that my first clinic didn't really know how to deal with the endo, and it's made a big difference. I've got the go ahead to start stimulation meds early next week so it all feels very real suddenly!
I’m sending you lots of good energy and success for your round. We have been given the go ahead for a round before surgery so I have my nurse planning on Wednesday. I need a 4 week break after stims before surgery due to the risk of blood clots from stims and also surgery. My fertility consultant mentioned after my op I’d probably need 5 months before I can think of pregnancy. I know that was one of your questions.
Thanks so much! That's brilliant news that you can go ahead with IVF before surgery, I just think it really gives you extra security/comfort to try to freeze some embryos first. You must be delighted. Hope the planning meeting with the nurse goes well. I don't know if they will suggest it for your first cycle but ICSI also really helped my IVF outcomes. It's really good to know how long you need to wait after surgery before pregnancy, thanks for that update. The best of luck with your round!
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