Tips for Finding Your EndoTribe

Once I received my official Endometriosis diagnosis, I spent at least one year relying on my husband and my family. I wasn’t given any information on support groups or advice lines, so we were lost. We put faith in whatever my consultant said and the things we read online because it was all that we had.

It wasn’t until we moved (and I started getting involved with the online community) that I realized how hard it must have been for my husband. And in a way, how limited my support had been–no one in my family knew anything about Endometriosis. But, they were always there whenever I needed to make an important decision.

Support can come in a variety of forms. In hopes of helping you, I want to share the different methods I use and my personal experience with each–both positive and negative.

Local Support Groups

I turned to the UK’s leading charity for Endometriosis, Endometriosis UK, first. Endometriosis UK provided me with information on local support groups and even went as far as putting me in touch with a group in my area. The local group held monthly meetings at a local hospital, and sometimes, local healthcare professionals would come in to give advice.

One of the pros of being a part of an Endometriosis UK group included the fact that the information from the meetings was circulated among members, even if you hadn’t attended. Now, I’ll be honest and say I never had the chance to attend – the reasons predominantly being that the time of the meeting was during work hours, but also because the group only had space for a limited number.

The meetings were often canceled at the last minute and whenever I had additional questions, I never seemed to get a reply from the people who were running the group. But we all know how consuming this disease can be, so I can see where meetings may need to be canceled or rescheduled.

The support group I did attend regularly (and found incredibly useful) however, was one for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Even though the group wasn’t specifically for Endometriosis, I still had the opportunity to talk about my overlapping symptoms with a group of people who were suffering with ME, too.

The best part of having a support group such as the ME support group is that it gives you a chance to be surrounded by people who are experiencing similar things – there is a mutual understanding. Listening to other peoples’ stories or experiences is useful and reassuring.

Health Unlocked

I stumbled across Health Unlocked one day while I was looking for advice on treatment options. Health Unlocked is an online support network and forum for people with all sorts of chronic illnesses. You can become a member for free or even post anonymously if you’d like.

Health Unlocked is useful whenever I need to ask a question or looking for advice on a specific topic. The platform also allows users to post in different disease-focused forums, such as the Endometriosis UK discussion thread or the Pelvic Pain thread.

Using online forums are great for people who don’t feel comfortable sharing their thoughts and feelings in a face-to-face support group session. The only negative? Using an online forum could cause confusion/misunderstanding.

Family and Friends

Clearly, your friends and family are super important. Your family should always be there for you – I know that my mom, dad, and husband are the first people I turn to. Remember, your family will love you no matter what you’re going through.

My family members have been incredible throughout my chronic illness journey. They’ve traveled miles to take me to appointments, helped me financially, and fought with me when things were not going great.

My husband is incredible, too. When I was first diagnosed with Endometriosis, I told him he didn’t have to stay with me (as fertility problems are highly associated with Endometriosis). His response? “Don’t be silly.” Then he planted a big kiss on my forehead! I would never want him to feel like he is my caretaker, but he does do a Hell of a lot for me and I cannot ever thank him enough. Having someone like him in my life has really helped me push through the tough times.

There may be some things you don’t want your family knowing about (aka details about your sex life), or you may not want to tell your other half about the depths of your period, so you may have a few close friends to turn to. It may be a friend that you’ve known for years who has been through the journey that is Endometriosis with you without even realizing it, or it could be someone you’ve just become close to recently. A good friend should always check to see how you are, want to meet up with you, and enjoy spending time with you–Endometriosis should not take your friends away.

If you’re finding that your circle of friends is getting smaller and smaller, I’d encourage you to reach out to them. They may just have no idea what you are going through or how to talk to you about Endometriosis. If that’s the case, try and be open with them and explain what you’d like from them (e.g. invite me out even if you think I’m going to say “no.”

You could always point your friends in the right direction to help them understand. I have definitely lost a few friends because of this disease, mainly because I am not always up for going out or struggle to eat/drink what everyone else does. But, I think living with Endometriosis just shows you who your true friends are.

Online Support Groups

This is where I have found the most support. By just entering a few simple things into Google, I came across loads of online support groups, ranging from those on Facebook, forums, and personal blogs. Social media is a really great place to raise awareness and support each other because we spend so much time there. You can connect with people from all over the world and listen to so many stories and experiences. (You’ll feel like you have a whole new group of friends.)

The one thing to mention with online groups is to be careful. Some groups I have come across are quite restrictive in who can join and what you can post. For example, I have come across groups that only let members join if they have had excision surgery instead of ablation, have had surgery from a particular list of “specialists” or have had a confirmed diagnosis. Some of my posts have been deleted because they were “not in line with the group rules” (which were a ridiculous set of rules, let me tell you) or because I hadn’t read the group’s “terms and conditions” first. I have also experienced first-hand how competitive these online platforms can be – sort of like “my symptoms are worse than yours” and things can quickly change from supportive to negative. (No one wants to be in a pissing contest.)

That being said, the ability to reach out to a large number of people who are in a similar situation is very beneficial. Sharing information, experiences, and always having someone to talk to provides me with a lot of reassurance and hope – it makes me feel less lonely.

Blogging or Keeping a Journal

I guess you could say this is self-soothing and self-supporting, but writing down my feelings or experiences has been a great way to get things out of my system. Things such as blogs and diaries give you the opportunity to write what’s bothering, then you can just close the book or shut down the computer – you have that physical cue that it’s now out of your mind. I also find that writing reduces the stress I put on my husband (who has enough to deal with).

Personally, writing a blog and being a writer for DO YOU ENDO has not only helped me find an outlet but has given me the opportunity to give back to the online community who has helped me so much. (I can’t see a “bad side” to blogging or writing!)

Work and Colleagues

Now, this may seem like an odd one and I think it probably depends on your relationship with your work colleagues or even the type of work you do, but for me, knowing I have my colleagues’ support enables me to have the confidence to speak out if I have a problem. I told my line manager about my Endometriosis (and other health conditions) as soon as I applied for the job – I feel honesty is the best policy. (My manager has been brilliant. She even used her own time to learn about my conditions in order to better support me.)

If you have a manager or work team that is supportive, then that’s brilliant – but if you’re thinking that they could be a bit more understanding, having an open and honest conversation may open their eyes to what Endometriosis is like and how they can better support you.

OBGYN, Consultant, Mental Health
Support

You should have a healthcare professional who supports you and can help you make the right decisions. More often than not it will be your OBGYN, as they are the first point of contact.

You may find therapy with a qualified individual as a good form of support – each one of us is different and it’s no one’s place to judge you for seeking help and support.(If you’re uncomfortable seeing a therapist, there are other forms of mental health support, such as the Samaritans in the UK, or crisis hotlines.) A great benefit of having support from a qualified therapist is that he or she will be armed with a variety of support methods to help you cope with how you’re feeling.

If you are struggling to find support, then I would encourage you to look into one or more of the methods above to see what you’re most comfortable with. You’ll often find in the chronic illness community that there is an endless supply of support–you just have to reach out.