Completely lost

[Tyschajayne]

Hi everyone I'm new here and I have no idea what to do anymore. I'm 16 and have been struggling with my periods since ever got them. but since September I was in pain every day. I missed the last 6 months of school and only went in for my exams and that was tough. I haven't official been diagnosed with endometriosis because the consultant says I'm too young to have the lap. But my GP is really annoyed that they wouldn't do it. I just how restricted I feel by this, I struggle to leave my house, I feel so depressed I ant stop crying, I also feel like the pill hasn't helped with the emotional side of things but I just feel so lost. I used to be a really social person but now I get serious anxiety if I leave my house if I'm not with my dad. I was also wondering if anyone has lost a lot of weight due to this, I have no appetite, I have honestly forgotten what it is like to feel hungry. My relationship with food is so bad, I seem to be obsessed with it worrying about what to eat next because I just don't feel hungry.

[GraceK]

If your doctor want do any thing for u then u need to find another doctor to go see. Don't give up keep push the issue no matter what the doctor's say!!!! Keep your head up high. There are specialist for endo. And they will treat u. Look up endometriosis centers!

[Tyschajayne in reply to GraceK]

Thankyou I am under a consultant who specialises in endometriosis but they just wont do anything because of my age, which is annoying because I ant start college like this I cant start missing weeks because I'm in so much pain I cant get out of bed somedays. But I'm going to back to the GP and hopefully they can refer me back to the consultant sooner.

[GraceK]

And yes I bleed for almost a year straight before the doctors would help me but I didn't no there was doctors that could help me. I lost all my weight. It hard for me to eat too

[Tyschajayne in reply to GraceK]

that's sounds awful!!! did you manage to put any of the weight back on or have anytips on what to eat??

[GraceK in reply to Tyschajayne]

Yes I did get some of my weight back. But it's hard to keep my weight up when I feeling sick all the time. But I still make my self eat.

[Charlenexxo]

Get a scan done. Ask to see a gynaecologist. Also gastrointestinal consultant. Go on the fodmaps diet for your tummy. Make sure your on a combination pill

[Tyschajayne in reply to Charlenexxo]

i have had so many scan and they have all come back inconclusive and I am on the pill have been for a year but I thank you I will defiantly look into foodmaps diet.

[Scooteeder]

Hi,

I'm writing this to you, because hearing what you wrote just makes me feel so sad, and angry, on your behalf. I am in my 40s now, and have been diagnosed with Endometriosis. It took me a VERY long, hard fight to get the correct diagnosis. Please understand that there remains a LOT of ignorance and misunderstanding out there, in respect of Endo. Even medical professionals can lack knowledge and expertise in dealing with this illness. As a consequence, there are lots of myths and misinformation circulating, too.

YOUNG women certainly CAN suffer from Endo. You can begin to experience obvious symptoms of this disease from the moment you begin your periods. It's sad that, even nowadays, so many women remain scared or embarrassed to talk about things like periods openly - this is perhaps why Endo remains so mysterious! One of the MAIN myths about Endo is that it is "just period pain"! Believe me when I say that periods should NOT be really painful, and that doctors or other people who tell you that period pain is just "normal" are mistaken. Many women who go on to be diagnosed with Endo experience heavy, irregular and painful periods, that often start in their teens. I can empathise with you to an extent - my periods as a teenager were irregular and very painful, sometimes heavy too. I ended up trying the Pill (Dianette and then Marvelon) to see if it would regulate them, but I found the side effects far too unpleasant to continue taking it for long. It's dreadful that your symptoms should affect you so much that you miss school. Do understand that healthy periods should not be really heavy, painful or irregular and that if yours are, it is a sign something is wrong.

The ONLY way to accurately confirm diagnosis of Endo is to perform a diagnostic lap. I would continue to push for this, if I were you. You may be young, but if your symptoms are suspected as being the result of Endo, surely it is better to know (and to know what you are dealing with) than not? Taking things like the Pill only masks the symptoms of Endo, it does NOT remove it. Besides, there are side-effects from all medications, and the longer you take the Pill, the more possible it is that you could experience side-effects.

Perhaps, at your next medical appointment, you could ask again about surgery to confirm diagnosis? This is probably in your best interests, as if you do have Endo, then surgery is again the only way it can be removed. It might be helpful to take somebody (mum or dad, maybe) to your appointment with you as back-up and moral support. Then, if you forget to say or ask something important, you have someone else who can; you also have somebody else to listen to what the doctor says, so that if you get upset, confused or find it stressful at the appointment and cannot concentrate, the person you take with you can tell you everything the doctor said. Also, if the doctor gets things wrong, or says something you disagree with, you have somebody else to help you present your case. I also find that it can help to keep a symptom diary in which you record all your symptoms, when and where they occur, and how they make you feel. Keep a diary of all the treatments you try, too - plus their side effects, and whether they work for you, or not. Then, when you go to appointments, you have a lot of useful information you can take with you. Diaries like these can help you spot patterns to your illness, such as major symptoms, or which symptoms are cyclical. The more information you have that shows just how difficult your symptoms are making your life, the bigger the argument you have for requesting a diagnostic lap. Surely it makes sense to do the lap sooner, rather than later, because the sooner your Endo is diagnosed and treated (or the sooner you discover it is not Endo after all) the better! Once you know what you are dealing with, you can decide on a more effective future treatment plan with your doctors. Surely, the aim of any treatment is to ensure that you can get on with your life as best as possible?

Keep a record of everything that you have described in your post, above - including the fact that taking the Pill does not really help because it makes you feel emotional (this is evidence of side effects that you may not want to keep putting up with). Explain that your symptoms affected you so badly at school that you could only just manage to go in for exams. Explain the obvious stress and additional pressure this must lead to. Explain that you now feel anxious, and that you feel restricted by the doctor's decision not to do the lap because you are seen as "too young". Maybe if you can help the doctor to understand just how everything is making you feel, plus the fact that the side-effects of the Pill may also be depressing your mood, they may comprehend why it is that you desire so much to have the surgery. Furthermore, if you discuss this with your parents, and find that you have THEIR backing to have surgery, then this too may help add weight to your argument in favour of having the diagnostic lap. I suspect that your parents may already have some awareness of just how upset this has left you, and just how badly you are affected by your symptoms.

Anyhow, apologies for the long reply. I do hope there is something here that helps. Good luck and best wishes. E. x

[Tyschajayne in reply to Scooteeder]

Hi Thankyou so much I saw my gp last week and we spoke about the pill and currently I'm taking back to back months and it really hasn't gone well. I'm just going to complete the month to show the consultant and maybe when they see no improvement they might let me have the surgery sooner. I'm going back to the gp at the end of the week and going to ask if i an be refered back to my consultant.

I was wondering if you ever found certain foods triggered any of you symptoms/pain because I want to see if eliminating foods that may trigger or cause inflimation help??

many thanks

Tyscha x

[Scooteeder]

Hi Tyscha,

First of all, I'm glad to hear that you are still having ongoing appointments and discussions with your G.P. because it means that you are maintaining a dialogue about your symptoms and keeping important people updated. I think that your decision to complete taking the Pill in order to confirm whether it works or not, and to show the Consultant the results, is not a bad idea at all. That way, you can demonstrate that you did attempt to stick to a suggested treatment, and you can also demonstrate that it was a combination of side-effects and the fact that this treatment is having little positive impact on your symptoms that means it does NOT work for YOU. Instead, you require a treatment that DOES work for YOU. One that means a reduction in unpleasant symptoms, and a reduction in symptoms that interfere with important parts of your life - such as attending school/college, going out with friends and family, etc. (My personal feeling is that what I consider to be a treatment that works for ME is one which allows me to get on as best I can with all aspects of my life, whilst also producing few, if any, unwanted side-effects). Different things work for different people - it is important to remember THAT, and also to ensure that your doctor is aware of that, too.

In trying to find something that works for you, sometimes it's a process of trial and error (which is why I suggested keeping diaries to record what works and what doesn't, as well as symptoms, how you feel, etc.). Of course, as we discussed earlier, the ONLY true way to be certain that you DO have Endo, and to locate where it is growing (as well as remove it if possible) is SURGERY. Until you have had this, you cannot be clear as to what you are dealing with. Perhaps you could also point out this fact to your doctor, and remind him/her that not having a clear diagnosis could be having a negative impact because it makes it really hard to know what treatment to choose. After all, if you do not know for sure what illness you are dealing with, then you cannot be clear as to what treatment is actually required. So (and again, this is only my opinion) it may well be that the most appropriate way to ensure you get the CORRECT TREATMENT is first to ensure that you have the CORRECT DIAGNOSIS - and if this requires surgery, then perhaps it is time to consider it.

In the meantime, and while you are waiting to see if surgery is a possibility, there is NOTHING wrong with trying other methods to help control your symptoms. As I said before, different people find that different things work best for them - there are a huge range of things out there. Some people use painkillers or hormone treatments - however, I pointed out that all these really do is mask symptoms of Endo. Women also try things like -

YOGA or PILATES - stretching and stamina exercises can sometimes help ease pain, and build up core strength. This can help maintain flexibility in your joints, and ease the discomfort of adhesions (which are fibrous, sticky bands of scarring that may glue organs together, and can be caused by Endo). Also, exercises like this can help with general relaxation. Other gentle exercises such as WALKING and SWIMMING may help, because they too help maintain stamina and flexibility.

PHYSIO - some people opt for this in order to help manage pain, to locate sources of pain, and to maintain strength and flexibility. Of course, to see a Physio, you require referral by a doctor.

ACUPUNCTURE - can help some people with pain. There are different types, some involving needles, and some are more about pressure points. If you think this could be for you, read about it, or look it up online.

MASSAGE and AROMATHERAPY - again, this works for some people as it helps the body relax and so eases pain and tension. Besides, having an aromatherapy massage can feel very much like a treat or indulgence, which can make you feel "special" and lift your mood.

TENS MACHINE - this is often prescribed by a physio, and helps stimulate painful areas of the body with a gentle electrical current, so easing pain. (I sometimes use one - the sensation is weird at first - tingly - but you get used to it and stick with it if it works for you). Some people buy their own Tens machines at chemists such as Boots.

DIET CHANGES - there is a belief that changes to the diet can help ease Endo symptoms. Women changing their diet are advised to cut out, or reduce consumption, of foods that artificially increase oestrogen production, as it is believed that this stimulates the growth of Endo. Foods that can cause problems for women include drinks with caffeine in them (e.g. tea, coffee, cola), red meats, alcohol, chocolate, processed food (e.g. white bread, "ready meals", chips)... I would probably advise that if you are considering making diet changes, then you maintain a diary in which you record foods that trigger symptoms (what they were, when you ate/drank them, what symptoms you got and when). That way, you can teach yourself what your own particular trigger foods (if any) are. Also, positive changes to your diet include eating and drinking things that can HELP with Endo symptoms. For example, peppermint tea is a good diuretic and it can help reduce bloating and water-retention. Chamomile tea is soothing and can also have anti-inflammatory properties (as can peppermint). Fresh fruit and veg may be easier on the digestion, and because it is not processed, is less likely to contain artificial oestrogen. Drink plenty of water, too, as this prevents dehydration and flushes your system (which is also beneficial in preventing water-retention). For more info about the Endo Diet, see endo-resolved.com/diet.html

In my own case, I rarely if ever drink alcohol (but this is as much because I cannot abide a muzzy head and hangover, as it is about combating Endo!) - alcoholic drinks are a rare treat on special occasions. I do not eat red meat - again, this is NOT just about Endo - I used to be a complete vegetarian, but now just eat chicken and fish, as I do not wish to become anaemic. I find that I simply cannot stomach red meat. I also try not to eat much processed food, such as chips or pastry - partly because they trigger symptoms like upset stomach, and partly because I have never really liked chips or pastry all that much anyhow!

So... there are lots of things out there that may help, the trick is finding what works for YOU. Best wishes, and I do hope that you get matters sorted out to your satisfaction. E. x

[Tyschajayne in reply to Scooteeder]

Thankyou so much this has really helped