Dilemma

So I was told at my last appointment that I had to stay on the pill, or she thought it was 'best to preserve fertility', however I really wanted to come off it to improve my mood and general well-being.

However if it's going to cause a problem with fertility then I'd really rather it didn't as we're hoping for a kid in the next 5 years or so. I don't want to take the pill and feel awful if it's not going to affect fertility at all ( my lap was clear but gnyae thinks I still have some patches which will get worse off the pill) but I don't want to chance it and end up not only ruining my fertility but developing larger patches of endo ( if I have it at all). I'm tired of all the not knowing and feeling like I have to think now about the entire future, anyone in th same boat?

[jennt0506]

I've not heard of the pill having an affect on fertility. Endometriosis develops with or without the pill, but the pill is thought to help manage and decrease some symptoms. It's not a cure whatsoever, so I don't feel like your gyno is right there. It can sometimes halt development, but that doesn't last forever (otherwise we would all be on it after a lap and pain free!). Worth a second chat with your gyno I think. I came off the pill a year and a half and feel a lot better for it - if you feel like the pill is affecting your mood then that's definitely something that should be a priority as much as managing your endo x

[Hidden in reply to jennt0506]

I think she meant more that if I wasn't on the pill, the endo would grow and spread and affect my fertility, she basically told me to either have a baby now, or stay off the pill and risk infertility, or go on the pill from now til we want a baby!

And yeah, I've come off for now but the periods are crippling and she wouldn't prescribe anything as I think she was hoping I'd go on the new pills to try and stop my period (which has never happened in 4 years of taking multiple different pills) x

[jennt0506 in reply to Hidden]

My point was that the endo could still grow even with the pill. There are also other options around potential fertility issues. Is there any evidence endo is affecting your fertility?

It's not up to her what your choice is, she should be prescribing painkillers and other alternatives. If you have just had a laparoscopy, how come they weren't able to get it all around the areas most likely to affect fertility?

Sorry, I sound very skeptical, I'm just not sure this is the best advice. I'm no expert but the pill is no magical fix for fertility problems and endo, the issues can happen with or without the pill and the pill doesn't stop the risk of the endo getting worse either. And there are other options should you wish to explore them - she should be making you clear of all of your options and not just trying to lead you down one path - the decision to make is your own. And you certainly shouldn't have to just be dealing with the pain without anything prescribed in the meantime! x

[Hidden in reply to jennt0506]

Yeah no its fine, I totally get where you're coming from! I was under the impression that she assumed that any endo would be slower to grow back on the pill compared to not being on it as I have shorter cycles and bleed heavier, but that's just how I took it. Ideally I wanted to be off all hormonal methods, even if just for a little while to sort myself out while I change jobs and what not, but she made it sound like in order to have kids I had to go back on it now, and because kids are something I've always wanted, it's a risk I wouldn't particularly take but as you say, there's not really any hard evidence either way. That's what frustrates me, the not knowing! x

[jennt0506 in reply to Hidden]

Is she a specialist in endometriosis? x

[Hidden in reply to jennt0506]

I don't think so, tho when I went to see my GP and asked to be referred to a specialist, she just referred me back to the gynaeo until I asked for a second opinion at another hospital hoping it would lead to a lap. I don't have the time or the means to pursue a specialist and what not at the minute which really frustrates me, as after being pawned off for 7 years, I thought the lap would bring me answers, so to be told everything was clear and discharged crushed me. Now I'm about to move jobs to full time with limited holidays so atm I'd rather not push them with a load of time off for appointments as I'd still be on a trial period.

I think I'll give it a while off the pill and if problems persist or my periods are still bad then I'll go and get something done about it, I just hate the feeling that you're wasting doctors time and I really hoped to be down with all the insisting and pushing but I guess you have to do these things when you know something is wrong x

[jennt0506 in reply to Hidden]

I totally get where you are coming from. I've spent the last 5 or so years avoiding pushing, and now I'm in a worse position where I don't have anyone who knows me or the condition and have to start from scratch again.

The list of accredited endo centres is here: bsge.org.uk/centre/

What I'm planning to do is go to the doctors and push for the referral, and not entertain anymore of their 'rule anything out' tests they do to me everytime. But I guess it's easier for me as I've got a confirmed diagnosis - though every experience I've had since then was 'but you've had the surgery' despite the complete lack of cure...

Honestly I think the health service is one of the most infuriating parts of this condition. Trying to be taken seriously and listened to for something you know you have and know you need help for is exhausting and we need to use what limited energy we often have for our normal lives, not fighting for healthcare.

You're not wasting doctors time by the way. You're in pain, it affects your life, and could affect your ability to have children - that's not something you should just have to put up with lovely x

[Hidden in reply to jennt0506]

Aww thank you for your support x And yeah it just takes a lot of effort and disappointment, after 7 years they just told me it was just my anxiety so to finally have a lap was great, though he told me he thought my bowels might be affected too which was something I could accept, so to say it was nothing at all and discharge me felt like I was just being ignored again.

I'm wondering whether staying off the pill long term and then having surgery again if pains persist before we want to have kids would be wise, as I was initially denied a lap because I didn't want kids yet, so I'm thinking then I'd get some answers either way because either it would flare up and they'd say I have it and remove it and we could conceive, or they'd tell me I never had it at all x

[jennt0506 in reply to Hidden]

I'm not an expert on the fertility side of things, mainly because doctors refused to have those conversations with me when I was being investigated and then diagnosed, but from what I understand having less patches is better for fertility. I'm not sure why they denied you a lap because you didn't want kids yet, seems daft because most women with endo have multiple surgeries anyway, but then I was denied one because at 19 I was too young and it would just come back and I might 'grow out of it'. Lol.

You can definitely get it in your bowels, around any organ actually, but it can also be missed at lap as well. Have you had internal ultrasounds to rule out cysts and the like? x

[Hidden in reply to jennt0506]

Yeah the last ultrasound I had was like 2 years ago but since surgery was negative I don't think they're in a rush to do a second one. But I don't think the gynaeo will be willing to do anything til I've tried those pills and had them not work (like I've done with every other pill I've been given) so it's just another case of pushing x

[jennt0506 in reply to Hidden]

Nightmare really isn't it. There's another thread here about having all the symptoms but nothing showing and there being issues bowel wise: healthunlocked.com/endometr...

May be useful x

[Hidden in reply to jennt0506]

Thank you x

[NH88]

I came off yhe combined pill due to an unseen side effect that eas found by accident. I work in the health sector as a receptionist and eas asked to help test a new piece of equipment for checking ppls eyes. I had a blood clot/bleed. So had yo come off it immediately.

Although the pill helps symptoms of endo i dont think there is any proof it stops it as uou ate still gettkng the hormone estrogen which fuels the condition itself.

I was placed on the pill because they didnt want to bother trying to find out what my problem was. There was a general feel that even if they did a lap and found it tjere eas nothing they could or would do anyway....i was made to feel i was wasting time and would be wasting money.

The best thing i did was find a specialist. Endo is difficult to diagnose and there are alot of methods to help some are better for individuals than others.

It is hard to hear that somfthing can cause you to loose the ability to do what others believe is a god given definate for women: the ability (and sometimes even the desire) to have children.

It may be worth seeking another option on this matter regarding the pill....just so you can weigh other options up.

Good luck x

Keep strong. X

[jennt0506 in reply to NH88]

I agree about your experience over the pill - I felt exactly the same, that it was repeatedly pawned off on me rather than admit I needed the surgery x

[Hidden in reply to jennt0506]

Yeah I pushed and pushed for surgery and was told everything was clear and sent home just like that, despite being under for a long time and having been told before (by my usual gynae who told me the whole fertility thing) that my womb was tilted and larger after a few scans. I mean I don't want to say he missed some or didn't look hard enough because I'm not going to push for a problem that's not there but like, crippling painful periods and all the endo symptoms seem too suspicious to just have on their own x

[NH88 in reply to Hidden]

I had a severely tilted womb also. Leanning towards my back and pelvis. Scans were usless to find my problem and the 1st private gynaecologist Said it wasnt wndo as she could "move" my womb, she just wantes to get the £150 and push for what y doc advised in a letter which was the coil.

Thats why i went to see a consultant that takes a personal interest in endo and treats endo pxs specialising in it. He told me that was the very last thing for me to be doing. He treated me as an individual rather than as just another woman with a genral problem with periods.

X

[Hidden in reply to NH88]

Omg I was told that too, she wiggled it around and was like yeah it's not endo because it's not attached!

[NH88 in reply to Hidden]

Yep that was total rubbish. I had endo all around the back, mostly on the right traveling up my follopian tubes to my ovary. It was a few millimetres from the bowel and if left any longer would have absorbed into the organ sticking it to my womb.

My consultant was surprised i wasnt on stronger pain meds.

*sigh* hence why its better to go to someone who knows about this disease, how it works, and methods to help. If i had waited to long i could have been in trouble...but i had to end up doing all the research and asking for help through private means...which means i had to use savings. But it was worth every penny to get the answers i needed to make the decisions i needed to make for the path i wanted to follow to get the qualiy of life i craved.

(Wow that makes my journey sound way more impressive than it probably woild be seen by others 😂)

[Hidden in reply to NH88]

The surgeon said he checked the pouch of Douglas which was fine, so I assumed he'd sort of looked all round but if he didn't comment on my bowel or tipped womb (always assume it was tipped because endo was behind it) does that mean he looked?

[NH88]

netdoctor.co.uk/conditions/...

I couldnt say. Maybe its a question you should double check, just to put your mind at rest.

As far as im aware endo doesnt cause a tilted womb. Its just another part to the wonders of he internal structure and its ability to be different in everyone 😕

[Hidden in reply to NH88]

Yeah I read somewhere that most people who have a tilted womb also have endo, or vice versa? something to do with the endo behind it pulling it backwards or something like that. And yeah I will have to get back in touch with someone about it all x

[NH88 in reply to Hidden]

Its never a bad idea to ask questions whatever they are....even if you thinknits silly. Just ask any way. It will atleast make you feel better to get it out and sorted.

healthline.com/health/women...

Found this. There is a section on causes.

Let us know what they say. After you have spoken to them.

And dont forget you can always get second opinions if your not convinced. It wouldnt hurt.

X