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Endometriosis UK
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Feeling low after diagnosis

I was diagnosed with Deep Infiltrating Endometriosis two weeks ago and since then I have really been struggling. I’ve been feeling quite depressed and anxious and can’t pinpoint exactly what is making me feel like that but just feeling overwhelmed by everything really. It’s been about a twelve year journey between symptom onset and my diagnosis and I think I’m just finding it hard to process everything. I do have a few other stressful things going on with family and living situation which are not helping either, but I think the Endo diagnosis definitely triggered me into feeling worse. does anyone have experience with anxiety/depression related to Endo and do you have any advice? Just want to know I’m not alone really, thinking of joining a support group to connect with others in the same situation.

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You’re not alone. That’s why I think this website is so beneficial, reassures people that they aren’t they only one going through something. I think you’ll have up and down days, as you say, it’s probably too overwhelming to process anything at the moment, especially if it’s veen such a long journey for you! I hope you’re okay x

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Thank you - yes very grateful for this website, it’s so nice to have a safe space to share and vent! Xx

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Hi Meadowsweet

Your reaction and response is not surprising at all and completely normal. Also, you are allowed to feel like this you know. You don’t need to pinpoint it, you just need to know that you have had a tough time and feeling anxious, sad, worried and depressed about it is ok. Why would you feel anything else. It sounds like you have had a long road getting to your diagnosis. Whilst on one hand you May feel relieved to know what it is, it now means that you know exactly what you May be facing in the future. No wonder you are feeling overwhelmed. Now, you need to be a little kinder to yourself here. Do not give yourself unrealistic expectations. And people can say unhelpful things like “ well at least you know what you’re dealing with, and well at least you have a diagnosis I bet you’re relieved about that aren’t you!” So you can choose not to listen to people who aren’t supportive of you. The other thing is, if you already have other stressful things going on in your life as well, then it’s always going to make it less easy to deal with something like this initially. So my advice would be, being anxious about this is normal, getting help and support from a local support group is fine and help from here, give yourself some time to reflect over the next few weeks because you can only take one day at a time. You don’t have to do anything at the moment other than digest what has been going on for you. Then piece by piece it can become and feel less overwhelming. It’s often the simple things such as breathing exercises and mindfulness that can help here or if further help is needed then CBT is an option or talking therapies. I hope this helps. Take care. X Elise.

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Thanks so much for this, it really helps. You’re so right about being kinder to ourselves and accepting where we are now - I needed that reminder, thanks again xx

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You are most welcome. Sleep well and if you can’t, spill it all out on here! ☺️. Unfortunately I’m still in pain and can’t sleep

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Definitely not alone just keep talking to people coming on here has really helped me already as everyone else is going through exactly the same thing and completely understands how you feel. Hope you feel better soon x

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Thank you, yes it helps so much talking to people who understand on here xx

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Post surgery blues and anxiety are genuinely really common. I know it feels horrible but it honestly will pass and you’ll feel better but I know it’s a little scary. Try to just take things day by day xxxx

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Thank you, I’m glad it’s not just me (although I wouldn’t wish it on anyone!), I feel a little bit better already just from posting and connecting on here xx

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Hi Meadowsweet,

Everything you've written is exactly how I felt, so first of all I want you to know that you are 100% not alone but I know it's so easy to feel that way. I felt lonely for a very long time and only recently joined this site, it has really made a difference in how I was feeling. I don't post a lot but I do come on to read other people's stories and battles which is bittersweet because it's an awful thing to deal with but I am grateful to know I am not alone.

I was diagnosed in 2016, I went through a period of anxiety and depression also down to other goings on (arguments with my partner, work issues, flat issues!), I have anxiety anyway but it really got quite bad. It's okay not to feel okay sometimes, everyone has their ups and downs and my diagnosis wasn't as relieving as I'd hoped. However I did come to terms with it and it did get better, the depression went away and anxiety is something I've always suffered with but I've better learnt to cope. Following my surgery in 2017 things really turned around, my issues at home started getting better, the pain got better and I actually felt normal for a the first time.

It is okay to feel down and even lonely, but it's important you take steps to try and help yourself. This place is a great helping point, do you have anyone you can physically talk to? It's also helpful to have a good, understanding GP for support especially when you are feeling depressed and anxious there are methods to help with those feelings and your GP is the one who can help with them.

I am sorry for your diagnosis, but know that you are not alone. There are so many people here for you x

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Thanks so much for your reply, it definitely makes me feel less alone reading all of these messages. Glad your surgery helped so much too, crossing my fingers that it will help me too. My partner and mum are really helping me but I think I’m going to try and get some counselling too just to talk things over. Thanks again and all the best xx

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Your not alone, it’s so hard living with endo and with other stressful situations in life it just adds to it and is more difficult to cope with. This site is really good because we are all experiencing the same thing and we understand . If you need to talk or get things off your chest there is always someone on here who will listen. I actually take citalopram for my depression and propanalol to help manage my anxiety so your definitely not alone xxx

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Thanks lovely, yeah it definitely helps speaking to people who understand. Going to see if I can join a face to face support group at some point too. All the best xx

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Hi I was diagnosed with endo within 3days of hospital admissions due to a sudden lower pelvis pain and reallly bad abdominal pain. I too felt like this fromSeptember 2018 till now. Quiet recently a friend of mine got in touch and asked me how I was only to find out she has been diagnosed with the same thing after 14years. she had her surgery and was told after biopsy that she has endo. after that night talking to her for 4 hours and relating our symptoms and what we went through it reallly has helped me, I no longer feel or get emotional when I talk about my diagnosis the fact i will have issues conceiving in the future did kill me. It really helps to talk to someone who has the diagnosis upfront I am also going to get counceling sessions as I too have stress from other issues.

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I can imagine that would be really therapeutic speaking to someone face to face who has the same thing. Going to try to get counselling and join a support group after reading all the replies here xx

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You're very definitely not alone. Depression/anxiety is common with endo because of the fact they both have something to do with hormones.

Reaching out and saying how you feel is a good thing to do and we're all here to support you. Joining a support group is also a great idea, I'd also suggest going for some counselling, you can talk through your feelings about the endo diagnosis, but will also explore other issues you have at the moment, they won't be helping and the stress they're causing you won't be helping either your endo or your depression.

You could also go and speak to your GP, you don't have to go on medication if you don't want to, but it's there as an option if you really need it and it's nothing to be ashamed of. I've been on antidepressants now for nearly 3yrs, lowest dose you can get (at least it is of the one I'm on) and they do really help. I didn't want to go on meds, but I also couldn't keep going on like I was.

Just keep talking to people about how you feel and how it's affecting you.

We're all here for you xxxx

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Thanks so much. Yes counseling and support groups sound like a really good idea. This forum has helped a lot too, it’s so good to speak to people who understand. Glad the antidepressants are helping you, I’m open to anything that helps but going to try the counseling first I think and see how that goes. Thanks for your support xx

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Hey sweeeetieee, firstly it’s your hormones !!! There is a huge link between endometriosis and low mood/anxiety it’s all the hormonal imbalances I get it all the time :o but it’s okay honey because you are a fighter!!! You are never alone in this we all have each other and we are all fighters . After diagnosis we all feel down because it’s overwhelming news but baby girl that’s onky temporary ! There are soooo many herbal and vital supplements that suppress your endo aswell as it’s symptoms and change of diet can truly impact it . My diet changes have reduced my endo symptoms by 70% not to mention hormone therapy it’s all very helpful so don’t worry at all :) xxx

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Aww thanks lovely, really appreciate your support. If you have any resources for supplements and herbal things which help with endo I’d love to know, I’m very much into natural medicine and hoping to manage Endo as naturally as possible after my surgery to try to reduce it growing again. Very interested in the diet thing too... I already don’t eat meat or dairy but have quite a bit of gluten and a small amount of sugar and wonder if that’s exacerbating it. Xx

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Hellooo love !!! Yess I normally take curcumin , b vitamins , Maca , zinc and high strength fish oil supplements , :) for me personally gluten and dairy where my worst triggers especially gluten but I do recommend you trial and error with foods hun!!! I promise you will feel sooo good In as little as two months and you don’t have to do it permanently ! I eat what I like on weekends xxxx

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Thank you, definitely going to experiment with cutting out gluten! All the best xx

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Hi there,

I find your experience very similar to mine in some ways. I’m 23 and I’ve known I have endo since I was 19, but my previous doctor never explained what this means and how it affects my body and state of mind. I only knew that it causes bad periods and that I might have difficulties conceiving. However, 6 months ago, things got really bad - pain, bleeding, intestinal imbalances, all throughout the cycle, not just on my period and also pain during intercourse. I had anxiety most of the time, although I was quite a cheerful person throughout my teenage years. So I started asking several doctors what’s happening and finally, the same doctor told me that I should get surgery asap. Just like that, just because I started to point out that something is wrong. If I hadn’t, nothing would have probably changed in the way they treated me.

So I reached out to prof. Horace Roman in Bordeaux (although I don’t live in France) which is an amazing doctor, specialised in endo. He then explained what was happening, asked me to take several tests (hormonal, MRI and so on), put me on the pill and 3 months later I had a laparoscopic surgery in Bordeaux. Between the time I found out what’s happening to my body and the time I had the surgery, I started to struggle a lot with my condition. Things changed so fast, I had to go to another country to solve it and I felt a bit hopeless. After the surgery, I recovered pretty slowly, it took about 2 months to feel almost back to normal and now that I started my first period, the pain is back (because I just had surgery and the body is adapting). Because of all the hormones, the news and pain, I still feel pretty depressed. I cry alot, my mood is constantly changing, I’m really tired all the time.

But the thing that keeps me going is knowing that I’m not alone, that the way I’m feeling WILL get better and that now there are doctors who know more about this condition, things are improving and, finally, I know why I’m feeling the way that I’m feeling. I guess the shock of finding out that something is wrong with your body and that it isn’t just your imagination or being a weak person is hitting hard. But after, it gets better...

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I’m so sorry to hear about the struggle you’ve had to go through and I can relate to quite a bit of your experience. It’s definitely a huge mix of emotions when you are diagnosed from relief to fear, anxiety, anger and sadness. You’re right though that it helps a lot to know we’re not alone. I hope your pain improves and you start to feel some relief from your surgery xx

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When I was diagnosis I went home and cried on my bae's shoulder. Take a day off to recharge during a sunny day.

Anxiety and depression are unfortunately common but the way in which you decide to deal with the illness is everything and determines your future. I'm not going to tell you to stay strong because this is your moment to feel low but it's also the moment to wipe away the tears and stand up again and continue working towards a definitive change via a well-performed excision surgery

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Thanks. Yeah it’s tough to feel positive sometimes but I think our mental health and physical health are so intrinsically linked and I know that feeling depressed isn’t a great basis for healing so I’m trying to accept my sadness but not dwell in it xx

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It's tough to feel positive when doctors and loved ones may not be understanding! You feel alone, tired and in pain! But what you need to do it research and research until you find the right specialist. A specialist can be everything!

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Thankfully I do have a good specialist now so very grateful for that - he is an expert in endo and excision surgery so hopefully it all works out!

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I'm sorry you feel so low at the moment. It's hard getting that diagnosis, for me I sat there thinking great so what do I do now. I was diagnosed because I was trying for a baby for 6 years, I had three early miscarriages and I just had enough. The only thing that kept me going was the goal of fertility restoration. It was hard and before I went in for my lap I had pre grieved my fertility and got it into my head that in the worst case I would wake up with no ovaries ( the first words out of my mouth when I woke up was do I still have my ovaries). It's a difficult time. Just remember you are not alone in this, vent on here if you need to and it is ok to feel what you are feeling. Just because you look okay on the outside doesn't mean you are on the inside. Be kind to yourself and take some time to understand what and why you are feeling, come up with a plan and a goal and keep the faith. For me I felt a bit like a bull in a fight, I put my head down and just charged through it, people tried to keep getting me to talk about my feelings and kept reminding me of the worst case scenarios whilst I was trying to be positive on the outside. I kept on telling them that I was thinking about that, but if I thought about it too much then I would just fall apart. I just had to keep on barreling through. It was all I could do to stay sane. Sorry for the rambling. Just remember YOU ARE NOT ALONE.

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This is such lovely advice and support you have shared. I needed to read this too so thank you xx hope your doing well whatever stage your at!

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That ok glad it helped. I'm now 4 weeks post lap and have been told that once I'm ready I can start ttc, my right ovary is completely fine and my uterus is clear so I should be fine. I've been told to try for 6 months if it doesn't happen then I'll need to get a referral for a specialist fertility clinic. So fingers crossed everything will be okay. Like I said in my post I'm keeping the faith.

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It's good to keep the faith and while you have plans .. you have options which means chances!! You're right!! We have been TTC now for over 2 years. Have a lap booked in for end of May which I'm nervous about but also excited to hopefully rule things out.. I'm presuming endo or tube blockage which they're also looking for but after that it will be onto the joys (from what I've heard) of IVF . Glad to hear it all appears fine for you to try with confidence. Wishing you the best of luck xxx

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Thank you for sharing this advice xx

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I would defo recommend joining a support group, I was feeling pretty anxious before I found my group. It makes a big difference to meet ladies who are going through the same illness as you x

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