Feeling lost!

[SC_92]

Hello there,

Apolgoies in advance for the long post, I'm a bit lost and struggling with what to do next, so thought I would post on here and see what happens.

I've been back and forth to the doctor/hospital for the past 9 years with suspected Endometriosis in my bowel area. In the last 2/3 years, a nurse finally took me seriously and I went to see a gynecologist as a result.

The gynecologist suggested I get the coil fitted to mask the symptoms but I haven't done this because I'm very scared to try contraceptives in case they have the opposite effect and cause additional pain /stress. I feel ashamed that I haven't worked up the courage to even try the coil, but equally I don't want to mess about with my body with that risk of more pain, particularly if it's only going to hide the symptoms and not solve the problem.

My pain is regular sharp/pulsing bowel cramps that stop you in your tracks (often reducing me to tears) and frequent bowel movement that feels like passing glass. Additionally and more recently, I experience migraines, nausea deep stomach cramps too. And all of this extends outside on my monthly cycle occasionally.

I feel like I've learnt to live with the ever increasing pain and manage my life around it but I understand it isn't okay to live like this and ultimately (in the non COVID world) I don't do a lot of things because of it, so I feel restricted and limited by it.

Each month I feel helpless. I look online and read forums for comfort that I'm not alone but I feel like a fraud because I only have a suspected diagnosis. To me, I believe I have Endo but I feel down that I don't know for definite. Does it bring any more comfort to know for certain that you have it (even if it involves lots of invasive investigation) and what are the benefits other than reduced pain and surgery? I'm just fed up.

Also to add, a year and a half ago my mum had ovarian cancer (thankfully she is well now) but during surgery the doctors also found she had Endometriosis, so I did wonder if it is hereditary and fear I could be headed towards something similar.

Thanks to anyone taking the time to read and I would love to hear your thoughts and advice. X

[Afrohair]

Sorry your suffering to answer your question the only way to manage it is hormones surgery diet and it can progress if not managed as it's an imbalance, yes it can run in families but dosent mean you will get cancer!the only option I have at the minute is to try the coil I'm too scared but I put it down to this that five minutes of pain could be a life time or at least 3 years feeling soo much better pain wise and bleeding wise x

[SC_92 in reply to Afrohair]

Thanks for reading and responding, it's good to hear you are in a similar predicament with the coil. It is scary but yes, I agree it's probably worth it in the long term pain management. Thanks x

[Afrohair in reply to SC_92]

For me I don't need an operation for clarification I saw a specialist privately who said I had endo straight away from pelvic exam.your not crazy are you ?like all the docs are making you out to be?you know in the back of your mind you have endo !I'll tell you myself you most likely have endo !did you really need an op for that or can you go on to self manage an op is no cure but to manage the condition.some people have several ops but it can go either way make endo better or worse you will never know the outcome of it but op can cause scar tissue which is just as painful x

[MissPickles]

The diagnosis might be suspected but your pain is very real so please dont ever feel like a fraud. Medical diagnoses are just labels that help the medical profession to group you with other people with similar symptoms, they are based on a patient meeting certain criteria - not having been given that label doesnt mean your issues are any less serious.

Remember that anxiety can make pain and migraines worse so while you are waiting for medical help, try to do something like meditation or deep breathing exercises regularly.

[Cal15]

For me it really helped to get a diagnosis - it was a bittersweet moment because although finding out you have a chronic illness is not something to celebrate, the relief I felt in knowing that I was right and trusted my instincts really helped. But of course, you don’t need a diagnosis to join forums, read about and try treatment options, and you can absolutely validate your pain and suffering without a medical diagnosis. It just helped me personally almost “close that chapter” of wondering what was wrong with my body. One of the things that helped me push for a gynaecologist referral and then for a laparoscopy was that I knew both my mum and auntie had endo. My mum didn’t have symptoms but they found some scar tissue during another operation.

I got the coil put in during my lap procedure which was only 2 months ago.

I hope this helps and that you get the treatment and answers you deserve!

[PurpleSynesthesia]

Morning sweet,

You're no fraud - I'm waiting for a diagnosis too. Yes, it's definitely hereditary in many cases.

Please look up the pathways for endo diagnosis and treatment. Read the NICE guidelines. Search the forum member "Lindle" & read her thoroughly informative & practical posts.

Pills won't treat you at all but 'can' mask some symptoms. Unless it's excised by a specialist, it'll only continue to grow.

Keep in touch xx

[Lilyjack]

My endo was confirmed by surgery years ago but my new gyno wanted me to have a MRI scan recently to see if it was places they wouldn’t pick up surgically which it is. These bits are also inoperable therefore my only option to mange the pain is strong painkillers or hormonal treatments.

I’ve tried the coil, prostap injections and other hormone treatments and have just started Depo somethings work for people and somethings don’t.

It is all down to personal choice but I’d rather try hormone treatments, diets and supplements to manage my pain than strong painkillers.

So maybe request an MRI the next time you have an appointment with your gyno to see exactly where your endo is. It would may put your mind at ease

[USgalwthendo]

I agree with what Cal15 said. For me I needed the official diagnosis as I was trying to get pregnant and going nowhere. It was difficult to hear I had stage 4 endo but it did allow me to move on with making decisions on how to become a parent (foster, adopt, or IVF). The diagnosis is also helping me with my job so I was able to get a note from my doctor to work from home during COVID. He knows how much I suffer. I was told that it was likely I had endo and from all my research I feared I did. But only a lap can diagnosis with 100% certainty. But certainty was something I desperately needed while going through infertility stuff. Again it was sad but at least then I knew and could move on. I have a beautiful son today (via adoption). If I hadn’t moved forward I might not have him. I might have continued on the infertility hamster wheel for much longer. I don’t know what the coil is so I can’t comment on that. But I think you have revcieved a lot of great advice on this site. I wish you the best. Trust your instincts. ❤️

[SC_92]

Thank you all for your time and responses. It's so great to hear your experiences, advice and acknowledgement. I have found it truly helpful just hearing from you all. Thank you x