Feeling so alone😢

[Love_Yellow]

Why do I feel so alone?

I don’t feel like I know anything about endometriosis😢 I don’t know who to talk to and I’m so sick of been in pain and so so tired. I just fed up🥺😭

[PaoPetite]

Hello 👋🏼

Please don’t feel like that... believe me when I say you are not alone!! There’s a lot of women on this page to support you understand you and most importantly we all know how endometriosis makes us feel. There are a lot of information about endometriosis just google it and if you have any doubts you can always ask specific questions in this forum. We are all here to help each other. Please please don’t feel you are alone and I am sure you are stronger than you think you are, take one step at the time. At the beginning it’s like that you feel like you have no way out but this forum has gave me so much relieved, you will read a lot of different women talking about the same issues. I didn’t know about endometriosis until I had to find out by myself because the doctor (female doctor btw) kept telling it was “normal period pains” how frustrating was for me at that time but once i checked online the symptoms I had went back to the doctor and ask my right to see a gynaecologist because I suspected I had endometriosis and in fact it was diagnosed via laparoscopic procedure.... many doctors don’t fully give you information about Endometriosis or they were fully aware, I would say in the past 6 years have change a lot because women around the world are presenting symptoms relating to this illness therefore more investigations have been carried out.

I hope you can go through this state you are atm.

Take care 💛

[Love_Yellow in reply to PaoPetite]

Thank you so so much for your reply.

I have been looking on google but don’t feel like I get the answers I’m looking for.

I wasn’t expecting to still be in pain after having my OP.

I feel like my body has let me down, like I am been punished for something.

I keep getting really sharp stabbing pains in my left side and I don’t know if that is pain from endometriosis?

Pain in my lower back and stomach even with me been on the Depo and not bleeding.

I just think this is so cruel for us to go through.💔

[PaoPetite in reply to Love_Yellow]

How long was you last operation? What was the diagnosis? It depends how severe your case is, mine is very severe stage 4 endometriosis there are 4 stages 4 being the worse one, I was never prescribed any sort of treatment apart from pain killers Tramadol was the one they prescribed but I coined handle it, it is extremely strong and it used to knock me out completely. Please let me know what Depo is so I can understand you a little bit more... also how long ago was your last operation, I am asking this because after having my first operation e symptoms returned 5 months later and between those 5 months I never felt pain free

Also endometrial tissue grows everywhere really and it affect your nerves so maybe hay the reason why you have pain in your back, I have it too and sometimes could be your legs and even your shoulders.... I am only talking from my own experience what I found a relieve was cannabis tea 🍵 unfortunately that was my last resource and tbh was the only way I felt away from the pain! I wish the law can change and cannabis could be legalised for medical reasons 🤷🏻‍♀️

Also I have read another good advice above ... you tube videos it helped me a lot, just try to keep your mind occupied as well I know it easy said than done but believe me I understand you and I wish we could all have a real solution to this torture! All we can do it’s try to support one another in this platform.

Just write whenever you need cheering up 💛

[Love_Yellow in reply to PaoPetite]

My last Operation was October 2019 and I was diagnosed with Stage 2 endometriosis and she told me I have an enlarged womb but said that was nothing to worry about at this stage. Is a enlarged womb normal with endometriosis?

The Depo is an injection to stop my periods but even know I’m not bleeding I’m still getting the server pain😕

Does the endo grow back even though you don’t have periods.?

I feel like I can’t talk to my partner because I feel that’s all I go on about and he is getting fed up with me going on all the time.

My family do not understand at all!!!😭 my mam keeps saying get a hysterectomy but like I keep telling her and all my other family members there is no Cure!!

[PaoPetite in reply to Love_Yellow]

Awww darling 😢 I feel you! And many others here feel you too! It’s a matter of time until you educate your people about the severity of this condition.... let’s break down point by point 🤓

Enlarged womb ist due to adenomyosis (adherents in the endometrium) so basically endometriosis plays a big part here.... also was just a gynaecologist performing the laparoscopy? Because you need to be seen by endometriosis specialist if you haven’t been transferred to one you must “demand” to be seen by one.... that’s how my health deteriorated because I wasn’t not transferred straight away to a specialist... so please look into it thorough xxx

Thanks for explaining about Depo... I read a lot how many people are treated with different medication whilst I was sent pain killers that didn’t help at all.... so here in Germany I was prescribed with contraceptive pills to help reducing my cysts and pain and it actually worked! bare in mind my endo stage is severe! So I couldn’t believe it! Now I don’t know what the contraceptive contains in terms of hormones but it also stopped my period and within a month it got read off my am cysts 😱 the name is Maxin but also was part of my IVF treatment.... I believe just my opinion the operation you had wasn’t not as invasive to “protect your reproductive organs” so they just clean endometrial tissue as much as the can (when it’s not an specialist) so the symptoms in many cases don’t even go away because of who performed the surgery, and I am only saying this due to my own experience. So basically please ask to be referred to a specialist! Urgently

Now with your partner! Well I also had many issues with my husband back then, because of this society we live in for hundred aid years women have to endure pain right? Giving birth it’s painful and we survive .... so why wouldn’t we just “for period pains” do you get me? It’s the mentality of our society unfortunately and I believe it has declined with time people are not sympathetic at all even fellow women are reluctant to even listen to the profound pain I go through! They don’t want to know so ima go me men? It’s almost imposible, but if you get to talk to him a real talk sit down together tell him it’s not just a period pain investigate together what really endometriosis means and how much is affecting you and thousands of women around the world ... basically educate people around you specially your parter it’s so important to have that emotional support from loved ones, but yes it’s a constant battle and we are all here to help each other.

In term of your family, I ended up with a couple of friends and ditched even my own family because they simply couldn’t understand and few years later I ended up with people that care about me an decided to investigate endometriosis... so it’s all about time.

The most important point above all its that you need to go back to the doctors and ask to be referred to a proper endometriosis clinic to be seen by a proper specialist.

All the best xxxx

[PaoPetite in reply to Love_Yellow]

By the way sorry for the typos! So many 🙈 just writing really fast don’t realise it... hope you understand x

[Love_Yellow in reply to PaoPetite]

It’s okay😊 thank you so much for all that information.

I think the gynaecologist that did my Operation was a specialist in endometriosis and I also had a bowel specialist there to because she thought they were going to need to take part of my bowel after but thankfully they didn’t.

How do people end up having more Operations because I have been discharged, so do I need to go through all that again with getting referred all over again?🥺😕

[PaoPetite in reply to Love_Yellow]

OMG!!! Did you get discharged completely?? You need to have follow up appointments!!! This is outrageous.... they can’t discharge you, I don’t understand 😢

[Love_Yellow in reply to PaoPetite]

I have yes, I had my follow up 3 months after my Lap and she discharged me.

I collapsed on Saturday in pain and ended up in hospital. My GP has now put another referral in today. X

[MrsMarlene]

The things I am finding that help me to deal with Endo are:

- Research the web as much as possible. Theres also some great videos on Youtube that have helped me understand, and ones from other Endo warriers sharing their experiences.

- This forum! I'm here every day reading others experiences, sharing my frustrations and hoping for any tips and tricks that can help me. Thanks to others on here I have bought a YuYu hot water bottle (which is now my best friend) and am trying CBD oil for relief.

- Talking to family and friends. Find someone to vent to, that might understand. Its not easy, alot of my family still don't get why I can't walk some day or get out of bed. "Why don't you just do more exercise" is something my mum says. With chronic pain its completely invisible to others, but find someone in your life who can sympathise.

- Eat an anti-inflammatory diet if you can. I have felt better since cutting out dairy, sugars, and processed food. I eat plenty of red grapes, blueberries, vegetables and enjoy almond milk. Its a working progress but something I can do to help myself.

- Treat yourself kindly. Look after yourself. Do what makes you happy, and don't be too rough on yourself on your bad days.

I hope some of those things help you. Feel free to message me.

xMissMx

[Love_Yellow in reply to MrsMarlene]

Thank you so much for your reply.

I will definitely be looking into the videos on YouTube and could I ask where you get CBD oil and does it work?

[MrsMarlene in reply to Love_Yellow]

Look for a company called Hempura. They do oil, chocolates, capsules, teas and even lotions. Good prices and quick delivery. I was unsure it would make a difference so started off trying the chocolates and they def work for me! I now have the oil, but still figuring out what dose I need for my pain.

[MrsMarlene in reply to Love_Yellow]

Just an update for you, I've been taking cbd for just over 3 weeks and its made a huge improvement to my pain and symptoms! Its taken a little while for ut to work but its starting to give me my life back

[Love_Yellow in reply to MrsMarlene]

Thank you so much for your response. How much CBD Oil do you use please?

I got a 10ml bottle 250mg and I’ve ran out with in a week.

[MrsMarlene in reply to Love_Yellow]

Sounds like you started off on the wrong dosage. You have to build up slowly to stronger dosages. I was advised that with a 10ml bottle you should start with 6 drops in the morning and then 6 in the afternoon, that gives you around 15mg a day. You should do this for at least 4 days then start to slowly increase the dose if you feel you need more.

What type of cbd oil have you got? Did the company give you any advice?

[JulesUK]

As the previous two people have kindly said please come to this forum for support. We all know how difficult it can be at times, we understand. You can use this forum to search all the topics and questions to help you understand more. The more you understand the more you’re be in a position to seek out the best treatment armed with facts. We are here for you. x

[Love_Yellow in reply to JulesUK]

Thank you so much💛

[Angellouise]

Have you seen a knee endometriosis specialist ? I hope you get some help

[Love_Yellow in reply to Angellouise]

Knee endometriosis?

[Angellouise in reply to Angellouise]

Didn’t mean to put knee in there. Sorry bad typing. I meant an endometriosis specialist

[Love_Yellow]

Awww it’s okay😊

Yeah it says on the NHS site that she specialist for endometriosis.

[Love_Yellow]

Apologies

[Purple_202]

My heart goes out to you. I was diagnosed with endometriosis when I was 16. From the time I was 16 until I turned 30 I had 13 laparoscopic surgeries. The surgeries help but as you said never took all the pain away and the cycle just keep repeating itself. There were times the pain, frustration, and depression felt overwhelming. After all of that somehow I was able to conceive a daughter who in now a teenager. I did finally give up the fight when my daughter was two years old and had a hysterectomy. While hysterectomies do often help the pain it can lead to other health challenges. I was extremely lucky and able to keep my ovaries for an additional 5 years before one of those had to be removed. For me personally the hysterectomy did get rid of the majority of my pain.

You are not alone. Keep researching information on the internet and search for a doctor who will support you for the long haul.

Best Wishes

[JW33]

Hi there,

I’ve been reading your story and I feel for you. I too know exactly what you are feeling.

I was diagnosed with endo in 2012 via laparoscopy (I was 25) and I have to say, the laparoscopy didn’t help at all. I spent many more years suffering with extreme pain, heavy period and just generally feeling fatigued and exhausted form the constant pain.

I was then encouraged to try the Mirena coil as “this is perfect for your condition” a gynaecologist told me. I gave it a try and I had it in for 3 years and although bleeding got less heavy, it went in for weeks, I was still in pain constantly but a different kind of pain which is hard to explain. So... back to gyne I went and had a hysteroscopy and another scan. The scan revealed another condition which could possibly something for you to talk with your dr about? I was told I have adenomyosis. This is where the lining of the uterus is growing throughout the uterus muscle which causes similar symptoms to endo - but, it doesn’t respond to oestrogen like endo does. After this discovery the gyne said she wanted to figure out which condition was causing the pain endo or adeno so I was put on the mini pill initially for 3 months (cos of covid) and then started prostap injections to put me into a false menopause. Once again, this did not work! It seems like nothing I do completely stops the bleeding, and the pain continued too. This tells the gynaecologist that it’s likely that the pain and abnormal bleeding is due to adenomyosis and NOT necessarily endo. At this point I said “I’m 33, I have 2 children with no plans to have any more - please give me a hysterectomy” and he agreed that it could be the best option for me but again, there no guarantee of being pain free!

I really hope you start feeling better soon and I feel like we have to keep pushing at these drs to do something because we know our own body and if you genuinely feel like there’s no improvement, go back, and go back and go back!