Am I going to have to lie?!?

[PantaloonOnFire]

Being investigated for endometriosis. Scans/blood tests clear. Today I went back to the doctor to ask what happens next...seeing as the problem remains!

Doctor is sympathetic but her first question was where am I with children. I had lots of fertility issues but have a child (adopted). I didn't pursue fertility treatment. She said she would refer me to gynae but that if I told them I was finished with my family, they would not pursue a diagnosis. They would simply stick me on hormonal contraception and that would be that. I told her that I have serious mental health issues on the pill, hence I have not touched it for 10years. She said that if I am looking at this for fertility/conceiving then they would probably refer for a laparoscopy and see what they could do.

I have no intention of having a biological baby, I simply would like a diagnosis so I can make an informed decision, I know there is no cure.

This is a sensitive subject for me but am I really going to have to lie and say I want a baby in order to be taken seriously?!

Sorry you're going through this, OP, I have a close friend also suffering and I know it's not an easy place to be. I completely see where you're coming from and I'd probably say that you haven't decided re having a baby in the future yet. Which technically is true as attitudes change for many women. Obviously appreciate this isn't your plan, but I'd say this nevertheless as you 100% deserve a full diagnosis and as much information as possible. Every woman in this position does. 🌺🌺🌺

I was referred with no question at all over whether I wanted or intended to have a baby. I saw the consultant and had the laparoscopy booked for the same day.

You can say you are thinking about having another baby. You are. Just your conclusion is you don't want a biological baby but you don't have to say that.

You can say you'd like to be able to get pregnant. Well, you want your reproductive system to be fully functional which means you would be able to get pregnant. Never mind that you won't be trying to,

Thanks for your replies. I think part of me is just angry that whether I want a baby is even part of this. Of course, if I wanted a baby it might impact elements but to actually say they would be unlikely to even diagnose because of it has made me cross!

I want a fully functioning reproductive system in terms of I want the pain to fuck off. I guess for a moment I felt like an infertile second class citizen. As I say, it's a sore point. Thank you for the kind words. I will definitely just lie if I have to. Just don't feel I should have to do that, my health matters as much as any woman

Of course, if I wanted a baby it might impact elements but to actually say they would be unlikely to even diagnose because of it has made me cross!

It is very wrong. I am surprised your doctor actually disclosed this info, I think she was being kind to give you the heads up. The thing is you deserve a proper diagnosis and treatment for something that is wrong and causes you pain just as much as someone who wants to have a biological child. Don't feel guilty, can say you are "considering" anything you want without telling a lie, as long as you have thought about it.

I would ask to see another GP and when you speak to them describe how the pain is affecting your life - if it is stopping you doing things and having an adverse effect then it needs to be investigated properly and treated.

I would just lie like your doctor told you. You shouldn’t have to but it’s the nhs so needs must. I hope you get it sorted.

I agree that the doctor was trying to give me a heads up. In fairness to her, it hasn't been difficult to get her to refer me for things and she was happy to refer to the hospital again. I think sadly, from her experience, that is how they handle the cases. I'm cross with the hospital not the doctor. My appointment won't be until the summer as the waiting list is long so I have a few months to get through first.

I can see why you feel short changed and want a clear answer esp if it might have impacted on your fertility.

But I can sort of see where the doctors are coming from as well. If the problem is the pain and the hormones treat the pain why do you need a formal diagnosis? Whereas if you want a baby there's more reason to put you through surgery.

Btw just speaking personally the mirena really helped my endo pain and heavy periods but of course I could try that until I didn't want to get pg

*couldnt try tgat

Hormones affect my mental health massively. I've tried many pills over the years and I wouldn't touch them again unless there was no other choice. I'd love to just be able to just take the pill or have the injection but then I'm making a choice between pain so bad I am curled in a ball or mental health so bad I feel suicidal. With a diagnosis I could have other options.

Even if you're diagnosed with endometriosis OP the best way to prevent it from growing back as quickly is hormonal contraception. Otherwise it's possible you will need laparoscopies every few years. Depending on the area you live in the waiting lists can be massive. Could going private be an option for you. I say this because my trust the wait is around a year for a routine laparoscopy, urgent is 8 weeks.

I hope you're feeling better soon and have a diagnosis.

Private wouldn't be an option sadly. If I could I would come away from the NHS for everything.

I feel like I've got a life sentence. I've read that hormones are the only way to keep it under control and this actually fills me with fear. I'm not being dramatic when I say my whole life (and wanting to live) were affected by them. What kind of life is that? I have mental health issues anyway and the hormones magnify it all.

In my best world I would have a hysterectomy. My mum had one when I was a child and it was amazing the change in her. But nobody will want to give one of those.

Sorry, it's turned into a pity post now. I don't see how my life will be successful either way.

Thanks for the advice all, will keep pushing even though it feels like there is no point. for all who are suffering.

I think the only way to go is taking things one step at a time. You've been referred at least so see what they say then.

In the meantime the only other things to try barring hormonal treatments I think would be to do the naturalistic things which can reduce inflammation in your body. Lose any excess body fat, do regular exercise, gain muscle and cut sugar out of your diet.

Hormones can affect people horribly if they are wrong. Unfortunately, a lot of treatments seem to involve the 'try it and see approach' in regards to suitability for an individual.

I think the only way to go is taking things one step at a time. You've been referred at least so see what they say then.

In the meantime the only other things to try barring hormonal treatments I think would be to do the naturalistic things which can reduce inflammation in your body. Lose any excess body fat, do regular exercise, gain muscle and cut sugar out of your diet.

Hormones can affect people horribly if they are wrong. Unfortunately, a lot of treatments seem to involve the 'try it and see approach' in regards to suitability for an individual.

OP, I'm so sorry. I don't know if you've considered counselling and holistic therapies, acupuncture etc. as well, but it might be worth exploring this. Also regarding hysterectomy, I understand saying that you do not wish to have biological children would not lead to getting a hysterectomy recommendation? What a strange world if so. I suspect having endometriosis must have a big impact on your MH and physical wellbeing too, it's a vicious circle. I personally would try to save up if possible and go private to a really good consultant, perhaps there is a way if combining hormonal contraceptives for you so it doesn't affect your MH. I know exactly what you mean, numerous contraceptive pills I was on before made me feel extremely low and it's definitely easier said than done to put up with this daily. 🌺🌺🌺

Having said the above, there was one pill that did not affect my MH at all and it was fabulous (however they've taken it off the market as supposedly it was particularly risky in terms of heart attack/clotting). That's not the point though, the point is it is possible to find the right pill(s) for you but you need a good doctor. It took 8 years for my friend with endo to get the rightly balanced pills, but she got there in the end, so please don't lose hope ❤️

Thank you, I think they view hysterectomies as absolute last resort whatever happens but nobody even wants to tentatively discuss it yet.

Yes I remember a great pills ago that was taken off the market. They insisted the new pill in its place was exactly the same but it really really wasn't!

They do see hysterectomies as a last resort but if medication isn’t suitable for you then it might be your best option. The way my consultant described treatment for fibroids was that they go tranexamic to try and control heavy bleeding - then the pill or mirena (pill gave me migraines, mirena made me bleed longer and possibly even heavier), then surgical options to shrink / remove them, and then hysterectomy if all that fails. So I’m sure endo treatment will follow similar lines but they shouldn’t refuse you treatment if you don’t want to take one option of tablets. I’ve gone privately but went to an initial consultation with an NHS gynae and found she was very much pushing me down the route of a drug which despite me saying the pill made me feel like death and gave me a migraine, was still hormonal and seems to have fairly proven risks of liver damage!!
Definitely push for further investigations.

Hi op. Sadly for endo it takes an average of 7 years for a diagnosis. Sadly due to budgets on the nhs it’s not simple in some counties to refer unless there is a serious region.I feel your pain.
Mine was found when I was having surgery for pcos. Now I also have ando, so all 3 conditions have caused some bladder and bowel issues. I’m very fortunate that my consultant sees that most days of the month I can’t walk straight so next week I’m having A total hysterectomy.
Don’t give up, stay strong and keep seeing the dr until they take you seriously.

Thank you, my period is over now so guess what!? I feel a million times better! Literally wake up the next morning a new person! I am doing what I can myself as well. I've lost a stone and a half and eating much healthier food. This month I fell off the wagon and I think that contributed to the horrible hormonal mess I became this month. I can usually control it a bit better than that.? I've got my referral letter from Gynae through...simply says they have received the referral but can't offer me an appointment because there are none. My doctor thinks I will have one by the summer though.

In my head a hysterectomy is the only way forward frankly. But for now I'm going to write down how much worse my symptoms were this month and the link I've made with food etc. I guess I will have to stay on the straight and narrow or risk horrific misery!

@PantaloonOnFire
I'm am so sorry to hear this.
To be honest, I have 2 children of my own and I also lost 2 children. I had scans that said I PCOS but r t hen turned out i didn't have it. However I had loads of bleeding that lasted 3 years(non stop) 365 days x3

I had a laparoscopy last year March to see what the cause of everything was I.e not being able to conceive again and bleeding and abdominal pain. This procedure didn't reveal anything but had stopped my bleeding. I actually find it weird to be honest how a little procedure has stopped my bleeding but they can't find a problem.

I'm not trying to scare you but if I'm honest, if you want peace of mind I would say lie so lthey can get to the bottom of the diagnosis

Xx