Advice?

[TaylaQ]

Hi, i haven’t been diagnosed with endometriosis yet, however i am on the waiting list for the laparoscopy. i have been suffering since July. i have been to the NHS who ruled out ovarian cysts, thrush/infections/STI's, and i’ve been private who have ruled out IBS. however on every doctors/consultants/specialists lips is endometriosis. i collapsed in agony, unable to move last Thursday and was told to go see my GP, i did, and she told me (as has another doctor previously) to start trying for a child now, as that is a cure for endometriosis and i may struggle if i wait too long.

my issue is, I’m only 21, so my mother has been very un supportive and keeps accusing me that i am jumping to conclusions and that its a waiting game and i should wait and not have a child now (even though that could potentially mean never having a child)

my partner is struggling to perform sexually (i think it may be because he’s not ready for a child) however he denies that that is the case. we are also arguing a lot about, if we have a child what will we do financially, (stay at his mothers or take up my mothers offer of staying in a static caravan) if i should give up my last year of college and go back into working full time.. he also says that if we were to have a child we can get our family to babysit while we work and (i) go to college, which i think is wrong, i don’t want to force my family to help all the time, as its my responsibility. he also says that if we don’t live with his mother she wont feel connected enough to the child to babysit..

can any one give me some advice or at least support??

[luthien]

Ahh poor you

Sadly a lot of unspecialised gynae doctors suggest a child or hysterectomy as a "cure" for endo. There is no cure for endo, as we always produce oestrogen and endo needs this to grow there will always be new adhesions and growth. Not to mention endo can cause organs to stick together which women have reported as causing problems during pregnancy. Plus all the symptoms will be there if not worse after pregnancy so managing a newborn and dealing with endo and possibly and emergency lap as the endo can get really bad during those first few months could be difficult. Just being honest.

You're not in the right position as you say both emotionally and financially, so I'd add physically to that too because really to support a child during pregnancy and after you need to be well enough yourself first. I know it sounds selfish but it forms the basis of a good healthy future if you make sure you're in top form to have children and at the right time. I'm of the view that things happen for a reason - we can decide some paths and others are set out for us.

I'm still getting round the idea that we may not be able to have children and I'm 34! I've never felt I needed to, then I've been diagnosed with endo, luckily I've had a great specialist that has never said I need to have children or said everything's fine, he's always been honest and just said we'll see when we get to that point, when I'm ready. My hubby is really supportive, and having endo with all it's symptoms is difficult enough never mind planning for something you feel pushed to do. For more idea of what I mean feel free to read my experience and how I've coped mentally, here's my experience:

"All this effort does pay off - my story - hope it helps !"

I think you can just search for it on here.

Take a step back for a bit; take the time to just live, and get your relationship back on track. is your lap a diagnostic? If so you won't know what's going on until you have it. Wait for that and the results then see what you'd like to do. Definitely get an endo specialist to do the lap as general gynae won't spot all the endo. If you can ask for excision of the endo too in the same lap (some will do that), have a look of the BSGE website for centers near you; they're accredited centers to deal with endo specifically and will discuss fertility etc without the pressure on you to make decisions like a general gynae. Oh and when you do find a center and get your first appointment / results take your partner along to the meeting even just to listen; my hubby found it really good as he was asked how he felt about it all and if he had any concerns.

Wow that's a long post, sorry x

[JulesUK]

It’s so wrong of your doctors to advise you to try for a baby when you haven’t even been diagnosed yet. I still get so angry about bad advice even after living with this condition for a very long time. Do not rush into anything. Wait for your laparoscopy and then see. Apart from not knowing your diagnosis it seems like you or your partner are not in the position mentally or finainacially to have a child just yet. You do not know that you may not be able to have children, many people who do have endometriosis have children (and I know people with one functioning ovary etc who have). At 21 you should be in a good place to get treatment and protect your fertility as best they can. There are other short term options like zoladex or the mirena coil that can help your pain and symptoms and will temporarily stop your periods but when you stop/remove your periods will return to normal.

[Ajem197]

Hi, it is positive news that your doctors are talking about endometriosis as a possibility. It is often very difficult just to get to that stage! It takes most women many years to even get referred for a lap, so at least they are on the ball with that. However, it is wrong for them to tell you to try for children! As others have said, it is not a cure for endometriosis, and having endometriosis does not rule out having children. I was told at 24 I would never have children due to my stage 4 endometriosis, but I waited and now have an 8 and a 5 year old who were both conceived naturally with no issues.

Having children is not easy under any circumstances. Having children with a lifelong and often debilitating condition is hard work. It requires support and understanding from your partner. It is not something to be rushed into. Babies and children do not understand that you are in pain, or tired or recovering from a flare up. You are still mummy through all of that and still have to carry on regardless.

Your mum is right in a way, you do not have the results of the lap yet and you don't know the possible implications. She is probably trying to reassure you although it may not be coming across like that? It is really frustrating waiting for answers when you are in pain and worrying, but you are on the right path to getting those answers. Are you having the lap under a general gynae? If so, I would ask to be referred to a consultant with a specialist interest in endometriosis. It may mean waiting longer, but it will be worth it in the long run. As already suggested, look at the BSGE accredited centres local to you.

All the very best of luck with your lap and diagnosis, if you need any tips for what you need for hospital/ recovery just ask Xx

[Deanojerr]

Hi taylaQ I'm sorry to here about this, I am also waiting on a laparoscopy so know how you feel! As far as I've been told there is no 'cure' for endometriosis, it is an ongoing disease that can be managed through surgical intervention and hormone treatment. If you and your partner feel your too young to start a family, just hold off a wee bit before you know a little more about your personal severity of the endometriosis, the specialist told me that the best chance of conception would be after the removal of the endometriotic tissue. I'm 27 now and my husband and I are ready to start a family, but I think it's so important not to be forced into something maybe your not ready for! Your young and it can be controlled and treated, there is time! I hope this helps, best of luck! Xx