Should I go to a specialist with this?

[Laura221]

Hi everyone,

I know you're all probably sick and tired of 'could this be endometriosis' threads, but I hope it's fine I share my struggles with you.

I got my period when I was 10. Little by little, I started being in more and more pain. When I was around 12, I couldn't go to school. Especially the first day of my period, almost fainting, throwing up, not being able to move due to the pain,.. The doctor prescribed me a form of morphine against the pain, which did help, but after a few months the doc (rightfully so) said that the birth control pill would be a better option for me because the painkillers at my age were really bad.

Little by little, the pain got better, but after a few years (around 18yo) I started developing panic attacks. I tried several other pills and even the Nuvaring, but it only got better after quitting hormonal birth control.

I am now a year pill-free (I'm 21 yo now) and the pain around my period is slowly returning, back to the point I can't function. I also have several other symptoms: Back ache, abdominal pain, pain when I pee/go to the toilet around my period, pain when I orgasm around my period, and bad sadness and anxiety 3 days AFTER my period started.

My GP thinks it's all in my head and just prescribed me some supplements for my abdominal problems. I do start to think it might be endo, since my mom and great-grandmother had it before they had children and my mom said her symptoms kind of resembled mine. The reason I'm asking this question is that if you guys do think there's a chance I could have it, I'm going to a gyno specialized in endo in my local hospital. But I'm so run down now, by the doc saying it's all in my head, that I don't really dare to do it..

Thanks in advance!

[lizzyxx]

Hi Laura, I went to my gp too with my symptoms and he just kept prescribing me loads of different tablets saying I just had bad periods and it's normal. After about 2 years of this I finally had enough and demanded to be referred to an endo specialist but obviously at the same time I was worried as I just thought they'd also think my symptoms were normal and I'd have wasted their time. At my appointment though within 5 minutes of me explaining all my symptoms and looking at my medical history he said he strongly believed I had endometriosis and bypassed the scans and blood tests and said he needed to have a look inside. I was sent straight to pre op and have my lap on the 18th, always go with your gut instinct that something isn't right as we know our body's and we know what's normal and what isn't. I'm just glad I eventually ignored my doctors opinion and demanded to be referred cos even if I don't have endometriosis I can rule it out. Good luck at your appointment and I hope you get the help you need x

[Flynn_Maverick in reply to lizzyxx]

Identical story here too - 8yrs of being treated by doctors like a total lunatic, finally paid to see a gynaecologist privately (absolutely terrified I would be told the same thing and not to waste a surgeon’s time). Within five minutes she agreed it was almost definitely endo and I was offered a lap date 2 weeks later. It was endo!

I’ve seen two different endo specialists and both have been so kind and sympathetic and never made me feel like I was making stuff up. It’s a very common disease unfortunately and yet the diagnosis and treatment is utterly appalling until you get to see an endo specialist.

It’s simply not normal to be on morphine for period pain. I’m not a consultant gynaecologist but all those symptoms are classically related to endo... poor you. Please please see an endo specialist. I’m nearly thirty and have lost years to this disease - you’re only 21 - you should definitely go the appointment!

Have you got a choice of specialist? Research your surgeon if possible if you have a choice. Bear in mind that there are two types of surgery for endo - excision and ablation. Excision is meant to be far more effective but I had no idea when I started out getting treatment so if the specialist agrees you might have endo maybe discuss this option?

I too cannot tolerate any hormones and am very sad that I persevered with them thinking they would help my endo when they didn’t and instead made me very mentally unwell. Worse case scenario it’s not endo! But you need to find out what is causing you so much pain. Good luck! Keep us posted how your appointment goes xxx

[weekari]

There's a part of you that clearly knows something isn't right. Trust your instincts. You may or may not have endo, I think it's impossible to know in that symptoms alone because it varies so much but there's got to be a reason you feel the way you do and you deserve to be treated with care and respect.

Like so many people with endo, I was fobbed off. I don't have any period issues so I can see why with me, endo wasn't the first thing the Dr would think of but I've been so disabled by all my symptoms. I can't work and I don't feel like I'm really living. I've literally been told by several Dr's that my symptoms were psychological. I am a psychologist so took that on board and just accepted it, even though it wasn't what I instinctively felt was going on. Now, 4 years on, after a referral to orthopaedics for back pain, I've been diagnosed with severe endo. It's really shook me so much and I'm still coming to terms with it. I'm so upset I've been made to feel like I was a bit 'crazy' and have so much anger about it all. More than anything though, I have regret. I wish I just trusted my instincts. I was always saying it felt like something was inside me and that I was 'inflamed'. I was so right.

I also want to highlight that the medical approach is not your only option. Of course push with the GP (or probably get a new one as that one does not sound supportive) but there is a whole world of alternative therapies that can help so much. I think it's about really trying to tune into your body & needs and try find something that will help. For me, I've found that seeing a chiropractor regularly really helps with my back pain and I've started seeing a physio for acupuncture & visceral-pelvic mobilisation. I also use things like meditation, yoga and EFT that really help me cope with the emotional side of things. And I'm trying the endo friendly diet to try reduce inflammation. But trust where you feel drawn to. I'm a firm believer in that the body knows how to heal itself. It's just it's hard to understand its 'language'.