Pure sadness.

[Hannah0091]

Hey guys, don’t know if this very common when diagnosed but I feel so sad. I have been diagnosed for a few months now but recently I cant get over it & So so sad for no particular reason I feel so negative and hopeless. Even on days where I feel better I just feel like throwing the towel in and quitting work & any other commitments. I have the drive and desire to do things but it seams hard and I feel like there is something missing. I’m going into therapy next week so that should help a lot but for now I feel broken. Does anyone get like this with it all?

[RicEndoUK]

Dear Hannah0091,

I am very sorry to hear you are feeling so low. Endometriosis really does affect you both physically and mentally and you are definitely not alone in feeling this way.

If you feel you would like to talk to someone, I don't know if you are aware but Endometriosis UK have a free confidential helpline which is staffed by volunteers, all of whom have experience of the condition. You can find the opening times here:

endometriosis-uk.org/helpline

We also have support groups around the country where you can meet up with others who can understand exactly what you are going through. You can see if there is one near you here:

endometriosis-uk.org/find-a...

Take care and I hope the therapy next week is helpful. Keep us updated on how you get on.

RicEndoUK

Volunteer Moderator

[Hannah0091 in reply to RicEndoUK]

Thank you so much Xx

[endokicker1]

Hey hun,

I know exactly the feeling. Despair, sadness, being fed up, feeling left behind, feeling like theres no end to this. I want you to know I am here for you and you can message me. We can speak on the phone too if you want. Take care okay. You are not alone xxx

[Hannah0091 in reply to endokicker1]

Hi, Yes! Feeling left behind that’s it amongst many other things too but it’s hard to explain isn’t it. Thank you so much that’s really kind! Xxx

[Ginge32]

Hi 👋🏻

I don’t have any words of wisdom but wanted you to know you’re not alone!!

I am so exhausted all the time, by the time I get to work I have no energy to do

my job - no one understands so even when I ask for help I don’t get it. I often feel like quitting!!!

Just remember your body and mind are going through so much, we can’t be tip top all the time. Just have to have faith we’ll get there in the end!

Hope things look up soon x

[Charts]

Hi

I know exactly how your feeling. I think when something has beating you down so much it's take hold of you mentally. It's like ok it's sorted now but you just can't get over it, it's like your traumatized by the whole thing. I've just had two things unrelated to endometriosis happen to me recently and I honestly feel like I need counseling. I keep saying move on now....but I just can't forget about it. I've been having endometriosis symptoms again on top of my other things and it's just so hard to feel positive. I think you need to give yourself time to heal physically and get back on top mentally (with help from therapy) and you will start coping better.

[Hannah0091 in reply to Charts]

Hi Thank you. Yeh I’m similar in the way that I’m saying okay now come on move on but I’m stuck here in this place I have back trouble on top of the endo stuff and feel like I haven’t been well all year because it all started In Jan. so 😖🤷‍♀️ I’m beyond fed up. Anyway thanks for sharing x

[Charts in reply to Hannah0091]

Funny all my health problems started in January. I'm in agony with my back because I've been in bed since January really. It really do suck the life out of you doesn't it. I just got to hope it all ends soon and I start feeling my age again!

[Charts in reply to Hannah0091]

If you don't mind me asking.... where was all the endo on you?

[Hannah0091 in reply to Charts]

Yeh totally does. On my left pelvic wall and somewhere else in the left but carnt remember 🙈they don’t know about my bowel. And I had adhesions and PCOS too. X

[Abbbb]

Hi hannah0091

So sorry to hear you have been diagnosed. It is devastating to find out you have this condition, and that there is a chance it is with you for life.

The only way I managed to deal with such a depressing thought is by attacking my condition aggressively. Through treating it, I felt in control of the condition rather than letting it in control of me.

Have you had advice as to the treatment you will receive? I think this is the most important in fighting endo. Unfortunately in the UK, we have long waiting list and a massive reliance on hormonal "treatments", however hormones treat the symptoms only.

I would highly recommend you go in the endometreosis diet first and foremost if you haven't already. This made the biggest difference to me over the years while waiting for surgeries. It took a lot of the pain and swelling down, and gave me a lot more energy. You can web search it, but in short it is gluten free, lacto free, low dairy, low meat (esp red meat), no alcohol, no sugar. There are specific veg and fruit that are better and worse depending on their inflammatory effect, but I found the above enough. I would cheat sometimes and find my stomach swell so it was really obvious the difference it made. I know it sounds depressing at first but actually it becomes something different to focus on.

Most important is saving your energy to fight with your healthcare providers in treating this disease - surgery to remove it. Once you've had it removed, hormonal controls may well keep it in check and you could have less issues in the future.

Wishing you all the best xxx

[Hidden in reply to Abbbb]

Echo this. I became grateful for the problem after 2/3 moths as it made me change my lifestyle, I met wonderful therapists and I became happier mentally and empowered through becoming interested in my fertility. I also stayed away from the medical model of treatment which helped me. It does not have to be devastating. See it as an opportunity to learn about your body and wellbeing - take back control as much as you benefit from that. X

[Kokobunny in reply to Hidden]

Hello

I’m a nurse and really did not know too much about the reproductive system and hormones but I do now ! I too empowered myself by doing massive research and changed my diet to take this by the horns amongst other things . I too am not following the medical model and do not trust their choices of treatment . I feel for the majority of people as they feel lost what to do but we have diff mindsets . I truly feel for all these women as the pain can be immobilizing ., and a lot of info can be confusing . I’m with u on the take control !

[Hannah0091 in reply to Abbbb]

Hi Abbbb, thanks for replaying. I have had the Lap. Changed my diet, cut loads of things out. Been to a phiyo learned to walk again. on the pill. Been to 3 different gyne’s 1 private which I paid. All of it I have done everything I can possibly think off and im still struggling that’s why I’m so fed up. Beacuse I’m doing all the things. CBD oil. Vitamins. Low inflam diet. Meditation. Cut down working hours resting. And it doesn’t seam like it’s enough, I don’t really know what my body wants from me. 🤷‍♀️ x

[Pinkyandthebrain]

Hi Hannah, I’m so sorry you’re feeling so low and I really recognise everything you say.

I was diagnosed three years ago, after years of pain, and I think I am only now starting to come out of quite a deep depression.

I think it’s really positive you’re starting therapy; sadly I didn’t go to therapy until about 8 months ago which i think is part of the reason why I got so bad. But there is light at the end of the tunnel, I am now doing better than ever and I have no doubts that you will reach this point too.

But I am so sorry that you’re struggling right now, hang in there, it will get better xxx

[Hannah0091 in reply to Pinkyandthebrain]

Hi thanks for replaying! Bless you it’s a lot to go through. I don’t talk to people at work about it anymore I just talk to my partner and I think he’s a bit sick of me with it all. He doesn’t say that but I think I would be if I were him. Hopefully therapy will go well for me and I can let steam off there talking about it x

[Frodo12412]

Firstly big hugs. Sorry you are feeling so low. I think it’s really common to feel like this because Endo is exhausting, effects your hormones and feels like a constant battle. Have you been taking any hormone treatment? That in itself can make you feel low until your body gets used to it.

Glad to see you are starting therapy. I had therapy, before I was diagnosed and didn’t know all my health issues were down to Endo, and I found it really helpful.

I’ve also found that taking a supplement with B vitamins, magnesium and selenium gives me a bit more energy and I feel less hopeless.

Look after yourself and don’t be hard on yourself for feeling like this. Xx

[Hannah0091 in reply to Frodo12412]

Thanks you for replaying I take vit B I’m going to look into magnesium & selenium maybe they will help I’m a 100% mile an hour before this all happened and not I’m stuck in this place 😖 xx

[Beestaree]

Hello! It could be that you're experiencing grief. Depression is one stage & it would make sense that this comes after diagnosis. The good news is that is is a phase & whilst you may dip in & out of various stages of grief when you're experiencing chronic illness - acceptance will come & you will start to feel more positive. If it sounds like you then, it's sensible not to make any big decisions in life until you are in a place that enables better management of your life with endometriosis. People have already made some great positive suggestions of how to cope, but you need to move through the sadness & that may just be a case of allowing yourself time & being kind to yourself for now. It's great that you have therapy organised, hopefully your therapist will have experience of helping people negotiate grief so ask them about it. You could also look at the work of Dr Kübler-Ross (7 stages of grief). Her work was based on terminal illness but I think same applies for chronic or disabling conditions. Reflecting & understanding why you feel like you do should make it easier to deal with. All the best x

[Hannah0091 in reply to Beestaree]

Hi Beestatee, yes I would totally describe it as grief and I have tried explaining that to people and they just laugh or brush me off so now I don’t talk about it and pretend that I’m fine. But it feels like grief that’s exactly how I would describe it! Thank you for helpful advice I will look at her work 👍 xx

[Beestaree in reply to Hannah0091]

I definitely feel like I've lost so much in terms of my quality of life, as a result I feel like I'm just moaning about the impact of my symptoms all the time & can't seem to get out of it. People tell me I should be grateful I don't have a terminal condition. I feel nobody understands that being disabled by illness has such an awful impact - even if I'm not dying! Although, I still count all the things I am fortunate for too!

[Hannah0091 in reply to Hannah0091]

I have just started reading about the 5 stages of grief and I’m total grieving. Is that silly? It’s crazy. Bless you yeh it’s really hard, people really don’t get it which is what makes it harder x

[Beestaree in reply to Hannah0091]

Sorry Hannah, I missed your last message, eek! I think it's great if it has clicked for you because like I said, it helps to make sense of your experience. When your health suffers you can feel a great deal of loss. Be kind to yourself & know this will get better in time x

[PurpleDig88]

Hi,

I completely understand how you're feeling. I kept a lot of my feelings to myself at work as people who don't suffer look at you like "it's a period, get over it" and then I was so fed up of telling my husband and family how I felt that I started to keep it in at home too which resulted in me sobbing uncontrollably in my bathroom when it all got too much to bear! Also having symptoms either side of your period wasn't easy to explain or experience! Have you had any treatment? Ultrasound, laparoscopy etc? Xx

[Hannah0091 in reply to PurpleDig88]

I have had my Lap and symptoms have improved since then (April) but I’m still struggling with chronic pelvic pain and I have a trapped nerve in my back so learning how to walk again after not walking properly since Jan x

[PurpleDig88 in reply to Hannah0091]

Glad to hear your symptoms have improved. I had my first lap on the 6th June so am waiting for my next period to see if mine have improved. Haven't had any usual aches or pains yet though, fingers crossed! That's awful about your trapped nerve though, I found it difficult enough to walk upright after my lap so can't imagine the pain of having a trapped nerve on top! xx

[Hannah0091 in reply to PurpleDig88]

I wish you luck for your period. Fingers crossed it will be easier. Yeh it’s one thing after another. Changed my lifestyle and diet too but 🤷‍♀️ still get the pain x

[Ladybex]

Sending hugs hun 🤗

[K-Endo]

Just wanted to echo what all the other lovely , supportive ladies are saying . You’re not alone . I have sad days , days were I just feel so sad and just cry and cry . I’ll admit I never feel better for crying I almost just have to crack on which is cruel. I was only diagnosed in May and I must say I am sick of when I tell people it is Endometriosis I get ‘Oh I’ve heard that can be really painful’ 🙄 If only they knew it’s a whole lot more than just the pain. I’ve kind of had to come to the conclusion that it is what it is and I won’t allow it to ruin my life . But I’m with you love and your not alone 💛

[Sandy90]

Hi Hannah I’m a 29 year old young girl awaiting urgent surgery of suspected endo I feel the same I was always a active person full of energy smiling and havein fun my symptoms started in February and it’s just worser and worser to the point I’m depressed over it I’ve got a trapped nerve in my back near my lung area and really bad pains in my right leg I’m lipping on it Ive put 2 stone of weight on and I’m not a big eater only one meal a day constantly feel full with bloated tummy like I’m pregnant I’m alwAys tired and moody and head migraine really bad I feel some days I don’t wanna get out of bed and face this problem it’s ruining my life and I don’t know what to do nobody understands 😭 can’t wait to get my laparoscopy hopefully might solve my problem I’m hoping have u put weight on?

[Hannah0091 in reply to Sandy90]

Hey! Sounds a lot to deal with. Yes I have put weight on Not loads just a bit Iv always been under weight tho. I have trapped nerve in my back too & starting to address it now because I did t know. Yeh I get the bloating too. I get it completely but it’s so hard cuz people don’t it’s a rough ride tbh. I had my lap in April and the pain has finally started to settle. It’s still bad in my pelvis tho 😬 but nothing like before 😥 x

[FluffyBunny123]

Hey, I got diagnosed a few months ago too and feel exactly the same. It’s like taken over my thoughts and it’s all I think about I think I was a bit in denial so it’s hit me a little bit now. What therapy are you going too? I’m still pushing to get my first op so I can see what degree mine is , I’m so scared about fertility I’m worrying and feel sad too

[Hannah0091 in reply to FluffyBunny123]

I know it’s really overwhelming. My therapy is through work but if u feel you need some the GP can refer you although takes a while. I hope your you get your op if u feel that’s what u need. It’s overwhelming with all the thoughts of what could or couldn’t happen in the future but try take one thing at a time x

[LittleG22]

I really feel for you. You are not alone and things will get better. I have had two bouts of counselling including CBT for nightmares following my emergency laproscopy. I hope that therapy helps and if you are feeling alone, why not see if there is a support group near you? They are listed on the endo charity's website and it is such a relief to sit and talk with women who know exactly what you are going through.

x

[CE_88_14]

Hey Hannah your not alone my diagnosis was like a kick to the face as we had been struggling to conceive (3 years) and all tests came back normal until I needed my appendix out. A gynaecologist came in and said they found endometriosis which was awful because I knew I was the reason we couldn't conceive and felt so much guilt. I then had a failed IVF cycle which showed an endometrioma on my left ovary. The NHS said it was mild so just left it in there which made matters worse as the IVF hormones made it so much worse :-(. I had a lap with a specialist to remove all the endo privately (fell pregnant the following month naturally) and only just recently started to have symptoms again. It is a horrible disease but I'm in the mind-set there is sweet FA I can do about it and it will always come back so just need to roll with the punches. Changing my diet has helped and it helps my partner and family are really supportive but its just part of who I am now and I wont let it stop me doing what I want to do. I will stick it out until the pain in unmanageable again then have another surgery to remove it hopefully by then we have had our 2nd child or adopted our 2nd so I can go back on hormones for good. The progesterone only pill worked wonders for me after the birth of my daughter just now I've stopped taking it that the symptoms have come back with vengeance :-). If you ever want to chat just give me a message x