Since I have decided to share my health journey on here and my social media platforms, I often receive messages from other women who either suspect they have Endometriosis, or who like myself, already have a diagnosis. I am so glad that I can raise awareness and connect with women going through the same thing and share what I have learnt along the way too. I thought it was about time I wrote a public post detailing the most common advice I give. Firstly I must state, if you are suffering with any symptoms please see a doctor for medical advice. This post is based on my own experience and therefore may differ from your own circumstances.
1. Do your research:
It takes on average, 7 years to get a formal diagnosis of Endometriosis and this is no coincidence. Sadly, there just isn’t enough training on Endometriosis and the knowledge is often very basic or incorrect amongst GPS and general gynaecologists. I myself was fobbed off numerous times before I was taken seriously which you can read about here. Endometriosis patients have to self advocate in order to get the care they deserve. If you have been diagnosed or think you may have Endometriosis a good starting point is to join Nancy’s Nook on Facebook. They have a section of files with lots of research based information and also a list of skilled excision surgeons worldwide so you can look at where your nearest specialist would be. It breaks my heart hearing stories of failed surgeries, unnecessary hysterectomies and gruelling hormonal treatments and worst of all doctors who are prescribing these ‘treatments’ without giving the patient the correct facts. I truly believe that knowledge is power, and by learning what is fact and what is fiction, can really help you navigate the minefield of Endo treatment.
2. Speak to someone:
Whether it is a friend or family member, counsellor or doctor, it is important not to suffer in silence. You don’t have to go all out and tell everyone like I did publicly, but it is important to create a support system around yourself. I have found since being more open with everyone I have felt a huge weight off my shoulders. By talking more openly about my experiences people can understand me better. I have also been able to educate those around me about Endometriosis, so they know what I am dealing with. My mum also joined Nancy’s nook to educate herself about Endometriosis so she could support me better. I have also found taking someone with me to my doctors appointments helpful as they can ask questions too and can give you support if you do come across a defensive or ill informed doctor along the way. Also when it comes to treatment, you will need physical and emotional support after any surgeries. It’s so important to acknowledge the importance of looking after your mental health too as being diagnosed with Endo or going through the process to get diagnosed can be difficult and can bring with it a lot of worries and stress. There are lots of support groups online and on social media too. If you are struggling physically or mentally, see your GP for advice.
3. Find a specialist
I can’t stress this enough, a good doctor is really worth their weight in gold. Please don’t hesitate to get a second opinion, or third, or fourth.. You get the drift.. Until you are comfortable that the care you are receiving. Your health is your wealth and you deserve the best care. You should be listened to. You should be able to ask questions and have them answered. You should be treated with respect (I must note that this also works both ways and you can not project any feelings of frustrations about previous doctors onto a new one). You deserve to receive thorough and skilled surgical care. The truth is, not every doctor can provide this. I wish it were the case, it really is one of the things that frustrates me the most. I have left many doctors appointments in tears in the past, but my advice is to take control of your medical care as best you can. Nancy’s Nook (the page on facebook I mentioned earlier) thoroughly vets the surgeons they recommend so that is a good place to start. Understanding the difference between ablation and excision is so important if you are going to have surgery. Also understanding that not every surgeon who says they can perform excision will have the correct expertise. A general gynecologist may only be trained to operate on the reproductive organs and not for eg be able to treat involvement of the bowel or bladder or deeply infiltrating disease. I recommend finding a surgeon who can is skilled to either treat all areas using skilled excision or works along side a second surgeon for complex cases where such involvement is suspected. It may require travel, it may be necessary to get health insurance, or it may be necessary to self fund privately depending on where you live. I know that is not easy for everyone.. But I wish I had known about excision and had known to seek out my specialist in the beginning. If you are being seen on the NHS in the Uk remember you have the right to choose who you are referred to, so if you are unhappy with your current gyne team, ask to be referred elsewhere.
4. Explore what pain management techniques work for you
I’m talking about the things you can do on a daily basis or have ready to go when a flare up hits. I wrote a full blog post about this already so I won’t repeat myself, instead you can check that out here. It really is different for everyone and I for one am still learning! I’ve recently been doing research into the holistic approach and looking at decreasing my everyday chemical load by using more natural products for example. It will be trial and error but it’s worth trying out new things if it could potentially make you feel a little better. Please note it’s always best to consult your doctor about any lifestyle or diet changes to make sure it’s suitable for you.
I hope these tips have been helpful! Please leave me a comment or DM if you have any suggestions to add or want to request I cover a topic in my upcoming posts.
Until next time..