After 2 years of many appointments i have now been diagnosed with severe endometriosis which is also causing problems with my bowels. The specialist has mentioned removing all my womanly functions as he is worried it will cause damage to my bowels and result in a bowel bag. I am currently taking the combined pill continuous with no break to avoid the endo getting any worse
I am 31 and have no children, neither does my partner. My specialist has advised he will give one chance of IVF and advised sooner rather than later....this is obviously a lot to take in and a huge shock to the system.
I am worried that if I do not get the ball rolling with the IVF now then I could ruin my chances of ever having a child.....however I would prefer to wait 6/12 months as I have America booked for 3 weeks this year and also a few other bits. I know I should be putting this first but I also need some time to get my head around it as I'm not sure I'm ready for a child right now.
What would people advise? I'm so confused with it all and feel really alone in it. I don't want to ruin my chance of having a child?
Thankyou in advance for any help xx
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SJW88
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Have you had your endo diagnosed via a lap? Was this with an endo specialist? If you've had neither, no doctor is in a position to tell you what can / could happen and what you should do.
Get onto the BSGE website; that shows clinics and specialists near you, have a look and make an appointment to see one of them; they'll most likely want to do a diagnostic lap to look at the extent of your endo and then consider what next. If you've had that then great but you'll need treatment to physically remove the endo that's where the BSGE center comes in, they'll want to excise it and unstick stuff.
A good specialist shouldn't be suggesting a hysterectomy or pregnancy or hormones with untreated severe endo as they should want to actually treat the problem, the endo itself by removing it. With severe endo often there's adhesions so many women have reported that pregnancy makes their symptoms worse. A hysterectomy won't stop endo growth neither will being on the pill. We are all mammals including men therefore we all produce a low amount of oestrogen which endo needs to grow. When endo is in large enough patches it produces its own oestrogen so hormones, hysterectomy, pregnancy won't stop growth, it may slow it down a little. But ultimately the best treatment is a lap with excision of endo, and unsticking of organs, this way the specialist can also examine your ovaries and tubes to check fertility. The after 6 months, when you have your follow up you can discuss next steps etc.
You've said you don't feel ready; IVF could make your symptoms worse (as it'll stimulate ovulation), pregnancy could too and quite often after birth your endo could advance quickly resulting in needing an emergency lap to remove endo. I know it's a severe case but would you want to be as you are now and looking after a very young child then possibly having to battle with needing a lap too and recovery?
Also consider that coming off the pill can take up to 6 months to have normal cycles and quite usually IVF isn't considered until you've had normal cycles and have been trying for two years (unless you go private).
A brilliant book I have that helps loads is;
"Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know" by Kerry-Ann Morris.
I got mine from Amazon. It goes through diagnosis, treatment, fertility, diet, exercise, natural therapies, and includes case stories and what to ask your specialist.
I understand about the not being ready to have a child yet; you shouldn't feel pressured to. I felt the same initially. If you're not ready then don't do it. You have a loving partnership, focus on that and getting your health sorted so that in the future you will be in a better position to decide. And if you've missed the opportunity; then that's just the way things are. I'm a spiritual person (not religious) but I do believe that some things are just meant to be, some paths are open to us and others are not, we cannot worry or fret about that, we should just embrace each day and live for each moment. We all need to take the time to look after ourselves. Have a read of my experience and my outlook on life:
"All this effort does pay off - my story - hope it helps !"
You can search for it on here I think.
Sorry it's not all the answers you were looking for or wanted, I wanted to be honest considering what I've been through / discussed with my specialist and what other women have said on here. Obviously it could all go brilliantly, but in most cases adhesions and sticking of organs from the endo just progresses continually.
Thank you for your reply. That is so helpfull! I have been passed from pillar to post with it over the last two years, it was a gynaecologist that did my lap...she didn't say how bad my endo was or mention my bowls at this point although I had explained I had issues with them. She attempted to remove a large part of the endo but said it was all stuck badly. She also said she tested my tubes whilst doing my lap and said that one was crushed but the other looked fine and was out of the way however didn't seem to be working, they didn't know why. She said i would probably not have children naturally and advised me to take the pill with a break every 3 months. I was then reffered to an ivf specialist who seemed to know more about endo and advised it was an extreamly severe case and was worried about my bowls. He said it can't be separated because they could cause too much damage and so thinks removing my bits and pieces is the best option. He said that I should not be having a break on the pill and in fact should be taking continuesly.
That's how it has now been left...I'm not sure I have even see a specialist in and at all? I'm so confused on where to turn....I've never had a family so having children is important to me but I just can't have it dropped on me like that. I need time to process . Xx
Thank you I’ve just read through your post I’ve only
Just been diagnosed with stage 4 endo stuck on my Bowel waiting for mri to distinguish if I need big bowel op or another lap
And I’m worried scared and not got kids yet 31 wanted children soon my consultant is a endo specialist but he said why haven’t you tried for kids yet ?? I said bevsuebuvwbhad bad bowel for two years and now I’ve got endo surely it’s not a great idea to try yet ??
I think they all have their own ideas
I’m trying to get my body right before I put it through carrying a child I too believe that life makes our paths for us .. im Spiritral too
Awww I hope all is ok! I'm worried leaving it being 31...I suddenly feel really old . I've always wanted to wait for the right time to have kids and I'm kind of regretting it a little now. They won't operate on my bowls at all? Xx
There's no such thing as too late; obviously we reach our natural age we stop ovulating, but before that now-a-days it's when you're ready, no ones going to say you're old. My friend had her child at 42, so anything's possible; and that was when she felt ready with her job, her partner, her house and just herself. I'm almost 35 and I'd like to have children but I'm accepting of the idea that it may not happen as we just go with the flow rather than plan - it's more natural. It not being out path is fine because I'd rather our relationship be stable and strong than put pressure on what we have just so I can have a child because "society says I should"! Hope that makes sense xx
As for the bowel op; depends on the severity of the bowel endo; usually they'll look at the extent of it and will want a bowel surgeon present (colorectal surgeon) for the op with your endo specialist. It's precautionary but makes sense; the bowel surgeon knows the structure, nerves and blood vessels so is in the best position to advise and assist with removal of endo from there. That's what I needed with mine; I needed just a bit of endo removed from the outside of the bowel (bowel shave).
Morning. Thank you that's made me feel loads better. Your right, sometimes it does feel like a pressure of do what you thinks right ECT. I want to wait but so paranoid of ruining my chances if I wait as I don't want to let my partner down. Also they have said i can't try naturally as I'm not aloud to stop taking the pill so it has to be ivf which is even more scary!
I honestly don't think I have even seen a specialist in endo. I have just been passed around within the nhs. Do you have to go private to get proper help? Xxx
No you can through the NHS; have a check of the BSGE website for specialists and centers near you. My area has it's own NHS "Endometriosis and Pelvic Pain Clinic" in the nearby Cheltenham hospital which is really handy for info and checkups. You just need to ask at your GP or when you go see your general gynae specialist that you want to be seen by an endo specialist, if you cross check that with the list on the BSGE website you can say specifically which one. Or call the BSGE website helpline and explain your situation, they'll help.
I went private for my treatment because my work has health insurance and I hated being passed around from doctor to doctor for years. Most workplaces or partners workplaces offer health insurance, most centers do payment plans, or you can take out your own health insurance. But that's for another post - or message me xx
Go to America, your on the pill so hopefully that can keep things semi at bay for the moment. My endo specialist said similar to me 6 years ago. I’ve the same stage 4 & bowel. I know hysterectomy doesn’t stop endo but can help if deposits taken away as well. I was high risk colostomy but after a year on zoladex it’s all a bit calmer & he says it’s a risk but not as bad as prior.
Don’t be rushed into things as IVF/trying for a baby is massive and emotionally exhausting so you need to be ready. Spend next 6 months thinking things through and letting your body settle with the pill then decide.
The last lady is right but I do find the 3 consultants I’ve met over my journey do focus on fertility then symptoms.
Thank you ...it's nice to know other people are going through the same things. I have been on the pill all my life so I couldn't understand how taking the pill would stop it because surely I wouldn't have it this bad if it did . I really want kids but I have so many unanswered questions and I need time to process...don't want to feel I'm letting my partner down if I wait and then can't have them and always think what if??
Thank you ...I keep feeling like I'm dealing with it ok and then it hits me like a ton of bricks, I go distant from my partner it's horrible. But I'm trying once I get through the worry of kids I think I will cope a lot easier...just feel broken at the moment and a bit of a let down to my partner. Xxx
Have you talked to your partner? I mean be really open, discuss all your worries, have a good cry, say what you're scared about and what you'd like from him regarding support and cuddles, ask him how he feels about stuff, and if there's anything he's worried about. You'll find he may be having the same worries as you but doesn't want to say anything as he feels his views aren't important at the moment as he needs to focus on you!
I did all this with my hubby and found out he felt he's let me down as he didn't spot the signs for my endo, he didn't know how to help, he wished he'd suggested a family earlier, he felt like he'd let me down by not being a good "husband". They are a weird bunch! But it does all make sense.
Aww that is so cute! I try to keep a lot in to be honest as I don't want to weigh him down with it......I think your right though! I'm going to get a bottle of wine and have a nice night in this weekend and get it all off my chest. ...this will defo end in lots of crying and lots of cuddles haha xxx
No way, don't risk a thing, go straight to the top, to what one of the best gynecologist in the world has to say....There is this excellent book he's written called: "The Doctor Will See You Know", Author: Tamer Seckin, M.D. He's been treating mild to extreme cases of endometriosis patients for 30 years. Visit his website too drseckin.com/ Research into all his advise, he has such a high success rate with his endometriosis surgeries (Laparscopies) because he totally understand that there is a GOLD standard of treating this horrible disease. I'd highly recommend you read this book before you jump to some treatment that you'll look back in 10 years and regret that you ever did. This is honestly the best read I could give you. all the best.........xoxoxo
Thankyou that's very helpful! Is it better to go private? I have just been passed around the nhs and havnt actually seen anyone that specialises in endo. I have put my trust in them but I don't feel they are really looking after me .
Its best to get a gyne that specialises in Endometriosis, absolutely. The skill level of the gynecologist/surgeon matters. Private gynecologists are very good, as they specialise in their practice. As long as you find one that actually specializes in endometroisis. And one that can do 'Deep excision surgery'. Some private gynecologists may also operate in the NHS, however some only operate through a private hospital. What I'm trying to say is that private is 'quicker', and if you find the right surgeron with the right skills, then 'better' than the NHS. Make sure you do some research though!
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Pregnant after Laproscopy for Stage 4 endometriosis.
Pain during ovulation, stage 4 endo 😞
What stage is my end?
endometrioma and IVF 
