Deep infiltrating bowel and infertility

[LJM89]

Hi all, this is my first time posting here and looking for some advice really.

I had a miscarriage in November (after trying for a second child for 1 year) and since then I have has extremely painful and heavy periods and deep pelvic pain with some pain after sex but not consistently and this is rare now. I was referred for an MRI from the GP after internal exam showed a 'black' cervix. MRI results showed 'deep infiltrating endometreosis' and a small right ovarian cyst. I was rescanned 8 weeks later (internal ultrasound) and cyst appeared to be resolving. After waiting to see the specialist for 3 months I was told the MRI appeared to show some infiltration of the bowel and I have now been referred to a colorectal specialist for a consultation and likely a colonoscopy to confirm and then discuss treatment which I believe is likely to be surgery.

My question really is around fertility. I have now been trying for a baby for nearly two years with one miscarriage. I can cope with the endometreosis diagnosis and wait for treatment options on NHS waiting lists but my number one priority is to have another baby and I wonder how much the endo is prohibiting this. I am 35 and don't want to wait too much longer. Does anyone have any advice on if having laprascopy etc helps with fertility as I am being told mixed things by every doctor I see - some say there is no reason I can conceive, others have said it can be unlikley by surgery may help me. Just feel so lost and not sure which way to turn to try and drive my treatment forward. Thanks in advance,

[Thomasct]

I have recently had a hysterectomy because my periods were hell, my bowel was stuck to my uterus so i needed colerectal surgery too. It was my choice to have the surgery, I have been blessed 3 babies 1 miscarriage, at no point did my specialist say I couldn't of had any more so I would say please don't give up hope xx

[Donnaysha]

Hi there,

I'm a bit younger than you but have a similar issue where my endometriosis affects my bowels and digestive organs. I just had my second lap to remove two large endometriomas (choc cysts) from my left and right ovaries.

It's good they've been able to get a good sense of whats going on through an MRI. Many only find out this info after they've gone through a laparoscopy and often nothing is done as they don't have the right people in the room. So I'd take that as a positive.

I'm concerned about my fertility but not ready for children yet hence I'm in the process of trying to freeze my eggs. My gynae suggested my second lap as the cyst is most likely going to be affecting my ovulation. He has now operated on me twice and not touched my bowel endo as he feels that if I can live with the symptoms related to the bowel endo then he rather not try to remove it as it increases the chances of scar tissue which isn't meant to help in pregnancy. Bowel tissue is very delicate so it often involves damaging the walls / resections to remove the endo properly.

You've already had one child so it might be possible to "finish" your child bearing stage of life without too much intervention surgery? I think its worth considering both the maximum and minimal intervention options with both your colorectal surgeon and gynae. And they should also be speaking to one another as it is meant to be a multi-disciplinary surgical process!

Hope that provides some insight from what I've been told and understood and doesn't overwhelm you too much. Good luck!

[LJM89 in reply to Donnaysha]

Thank you so much for your reply, its really helpful. I think that's the situation I am in, where I only want the surgery if it increases my chances of fertility because at this stage I can handle the other symptoms. If surgery were to decrease my chances of getting pregnant from scar tissue etc then I don't want it at this stage. But it seems to be hard to get any medical professional to give me any sort of answer on that. I am trying to stay positive and doing everything I can to get pregnant, but there is this voice in the back of my head that says unless I get my endo treated I will never fall pregnant - and I just don't know if that is true or not. x

[HolandstaceTED]

Hey there ,

I’m so sorry you’ve experienced all this pain for fertility it’s so hard to keep positive when the disease carries many more negatives really.

I have had 5 surgeries for DEEP INFILTRATED ENDO. I can finally now say it has been removed by excision laparoscopic surgery from my large bowel and left tube and ovary . I am lucky enough to have the fertility side of this health journey but for almost a year I have had an emergency ileostomy stoma bag(Stacey) I can’t say this decision was easy to go ahead with this health choice but it has worked out in my favour. Everyone’s bodies are different and everyone’s endometriosis varies so much. I wouldn’t rush surgery decisions. I’d make sure I am in specialist hands before deciding on anything and I would strong encourage to get your AMH levels tested and constantly track your ovulation cycle. I know anti inflammatory foods are very good for resetting the bodies immune system to help prevent it attacking itself while inflamed with endometriosis. I really hope this can help you in some way . Stay strong and get your knowledge because it will give you so much power over your body !

[Trinity613]

Hello, I had a similar experience with endo appearing out of the blue at age 37 and bowel symptoms only ( extremely painful bowel movements on first 2 days of period in rectum area). I was also trying for baby and as I fell pregnant very easily with my other children I was surprised when it wasn’t happening. I realised it must be linked to my endo and was , like you, convinced that without the surgery, I could not become pregnant. The NHS deemed my case not severe enough for a lap so I felt helpless. I started looking into supplements and started taking: NAC and Bromelain. Thanks Gd, 2 months later, after 12 months of trying , I found out I was pregnant !! I cannot tell you the supplements made the difference but I guess you lose nothing to try. Also the only reason your endo would prevent you from getting pregnant is if it is actually spread in your womb not just bowel area, which is a possibility as MRI can miss that. Ultimately, if all else failed, I would go for surgery as I have heard of many ppl getting pregnant after it. Wishing you the best of luck xx

[Purpleindigo]

Hey LJM89,

I'm so sorry you're having all these issues and the professionals are causing confusion.

As you've been diagnosed with DIE (deep infiltrating endometriosis) you can ask to be referred immediately to a BSGE accredited centre - these are the experts in endometriosis, and I would aways go with their opinion over a local hospital/regular gynaecologist.

Absolutely get your AMH levels done as this is a quick and easy blood test. This will give you an indication if your egg levels are within normal for your age.

In terms of fertility, it is possible that the endometriosis has spread to the fallopian tubes and therefore you can no longer concieve naturally. I am tubally infertile and this was diagnosed at lap with a dye test. You would not be able to see this on MRI or USS.

I would definitely speak to a BSGE centre about your options as carrying a pregnancy to term with DIE/endometriomas/adhesions can be difficult. You would be considered high risk and in my experience ongoing pain as the fetus grows could be extreme (I am a midwife).

I'm sorry, as I realise this hasn't been a particularly positive reply.