Help and advice needed: Hello I'm new here... - Endometriosis UK

Endometriosis UK

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Help and advice needed

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Hello I'm new here I came across this sight when looking for answers for my symptoms. I have been going thre this for nearly 10 year now some days I cant walk or move and I'm laid in bed all day in agony. On occasion I have ended up in ane due to the terrible amount of pain in my lower abdomen. I have been for numerous scans and even had a laparoscopy 2 years ago, which they said I had scar tissue of my c sections. I am at my wits end now I have tried everything and found no solutions or diagnosis, I am very convinced I have endometriosis I have been prescribed alsorts for pain relief including morphine. Any help or suggestions are much appreciated as I feel I cant go on like this.

Thank you

27 Replies

Oh I'm so sorry you're suffering so badly! I ended up going to my gp as I thought I had an inflamed appendix and was referred to gynae. After a load of scans and a laproscopy I was diagnosed stage 5 endometriosis. Scar tissue is a common cause for pain sadly. Push for your doctor to refer you to a gynaecologist as there are treatments to help relieve pain such as hormone therapies etc. In the meantime use a hot water bottle or heatpack on your abdomen when needed and use anti inflammation tablets or gels when necessary. Hope this helps

Thank you so much for replying, really appreciate it. I have been to gynaecology and they have sent me for ultrasound all they see are cysts that come and go and said they shouldn't cause me pain. My periods are horrendous would you mind if I asked you what scans you got to confirm your diagnosis, as I seem to think every time I go to the doctors a feel like it's in my head. They have palmed me of to the pain clinic to manage the pain and think that is it. Its driving me crazy I have no life with it. Any more advice is much appreciated just stuck at the minute. I will definitely try heat packs I use hot water bottles and tens but dont really shift the pain.

Thank you

I'm sorry you're doctors aren't helping 😔 I had pelvic ultrasound and trabsvaginal ultrasound. Has your doctor suggested oral contraceptives? They do help to control hormones and ease the cysts you have. I Have hormonal cysts occurring monthly but because I have the more a coil I don't have periods. Maybe ask your doctor for a second opinion or referral to a gynaecologist that specialises in endometriosis. It's not in your head! I thought it was in my head too, that's why I never spoke to my gp for 13 years thinking it was normal. You shouldn't be bed bound because of a period.

Thank you I have made another appointment to see my doctor this week hopefully he will refer me again as hes addimant I just need the pain clinic thanks for your advice though hope your well x


There is no other piece of advice as valuable as this. You need surgery and it HAS TO BE excision and you need it ASAP.

Please find a great BSGE centre near you or better, join the Nancy Nook group on Facebook and find a surgeon from there (or PM me).

Do yourself a favour and get surgery done right the second time :(

Many thanks for your reply , can I ask do you mean go in for a laparoscopy for a 2nd this time through a endometriosis specialist? I will look on Facebook thanks alot x

Hello! Please read my profile by clicking on my profile pic. StefaniaJW is absolutely correct. Please push for a laparoscopy that takes out all your endo found anywhere and make sure it’s done only by an accredited specialist endometriosis surgeon recommended only by the BSGE. Also please feel free to DM me and ask away with any questions.

Many thanks for your reply I have ordered the book you mentioned on your page am at my wits end with it. Can they do a laparoscopy for the 2nd time or would I be best getting a hysterectomy thanks x

Totally unqualified to give you medical advice. Only my own experience which is unfortunately plentiful. You’ll discover that hysterectomy is sometimes not a “cure” for endometriosis, there a whole chapter in his book, but everyone is individual and this disease treats everyone differently. Some ladies do find relief. Some don’t. If you have hysterectomy there are hormones you’ll need to take and they have side effects too. There’s a lot on this site about hysterectomy if you type it in and there much interesting reading. I’m reading it all too because there’s WAY TO MUCH GUESSWORK GOING ON here by GP’s, medics, gynaecologists, sometimes even surgeons. But. I want you to know YOU ARE NOT ALONE. The book you have ordered will give you some bloody good advice, I respect the surgeon a lot and he’s taught me so much. We need more Dr Seckins and we need them in the UK. You’re not in a dissimilar situation to mine in many ways. I am currently pushing for another laparoscopy and DEEP EXCISION SURGERY. I’m terrified too. But leaving endometriosis behind for it to grow is not the answer. I’m laid in bed in agony angrily typing this from pure frustration!!!! Hormones such as the pill, the coil, whatever else you’re offered only serve to mask your pain and your symptoms if the endo is not fullly removed and dealt with by a surgeon who ACTUALLY knows what they are doing. This is my experience. This is my frustration. I would hate anyone else to suffer my journey when ITS NOT NECESSARY. Being treated CORRECTLY in the FIRST instance at the earliest opportunity is the only way we’re all going to get the message across. Sending support to you. Without sounding like a dork. The book could change your life. I’m delighted you’ve ordered it. Best wishes, Nina.

It's best to get excision laparoscopy and not a hysterectomy

Thank you both x

Please get excision with the best possible doctor. Please contact me if you need names of the best endo surgeons in the country

Thank you I will look into it. With that does it come back though? Z

With excision? Normally not in at least 5 years, but most people I know personally who had excision for stage 4 endo started having issues again around 8 years later, not before

Thanks that sounds great x

Yes but you need to get endo surgery with a Nancy Nook surgeon or a great BSGE certified surgeon to be well for years. No just any excision can bring that

Thank you I will have a look for one, can I ask do you get a swollen or bloated stomach with the pain ? Thanks x

Yes, bloated and swollen and sore pretty much most of the month but a lot worse week running up to my period.

Thank you as didnt no if that was part of the symptoms. I look 5 month pregnant when I'm nearly due on its quite embarrassing. Xx

Yep. I know that feeling. I flew to L.A recently and was in agony on the plane and when I looked in the hotel mirror I was shocked! It went down eventually after my period was over. I looked about to burst and it’s so tender! P.S Did your book arrive yet?

Also just as an aside I’ve been experimenting with my diet a lot recently, cut out red meat totally and I don’t know if you’re interested but this month I’ve massively upped my Omega 3/6/9 fish oils and been eating wild salmon and fresh trout A LOT and this month my period has been a lot less painful. And much, much lighter. I wonder if there’s any correlation? 🐟🐟🐟

Ano I have often been seen as pregnant by people lol. What we have to go threw is terrible, yet the doctors just palm me of. After hearing others stories it makes me more determined to get help from a proper bgce centre. No not yet quiet looking forward to reading it . I never thought of experimenting with my diet as some days I tend to not eat alot anyway due to the pain. The only problem with that is i cant stand fish lol.. if you dont mind me asking how do you manage with daily activities or when you go out?, as sometimes I tend to be a hermer as panic incase I take really bad in public lol. Thank you x

Yes, I know that feeling too. When I was younger I had the habit of passing out in men’s public toilets!!! Mostly in bus and train stations in a desperate attempt to get home as quickly as I could. I can’t recommend that!! I really try and be kind to myself now I’m older. It’s like a switch goes on in my head and I know I deserve the best treatment mentally so I give it to myself. This sounds a bit odd but having endometriosis can really mess with your head. If you’re not careful it can take over. When I feel okay, on a better day, I make sure I go out and take in a gentle walk. When I’m not, I still go out but make sure I’m near home and my comfort zone. But there are still days I can’t leave the house and like to be in my own bathroom and loo. What does scare me though is I travel a lot and long haul flights give me major anxiety. As I’m older and my periods are erratic it’s hard to book flights. I would suggest just listening to your body, try not to get overwhelmed by your condition. I’m not sure if you’ve been diagnosed yet or even had a laparoscopy or treatment, but I feel like you really need some help now. Time to take action. The book is going to help. It’s in this way that you’ll be in control a bit more of your own body and not the other way round. If it were me. 1) Read the book cover to cover. 2) Make an appointment with your GP 3) At that appointment push hard to see one of the BSGE specialist accredited endo centres locally, if necessary print out the list from their website and take it with you. These are your first baby steps on a journey to recovery. Hope this helps. Do keep in touch. I’m here going through this too. Nina.

Thanks nina that means alot its nice to no I have someone to talk to. I do try and push myself a lot to go out as I have younger children. However just avoid going to far like you said. I have not yet been diagnosed however I have all the symptoms but my doctor just referred me to a general gynaecologists which didnt help. I am going to really push this time, as like you said alot of it is stressful and goes through your head, I often try plan my day before going out to see if I'm well enough , I have close family so it's good as am not on my own. Have you got anyone with you that understands your condition that could go with you, as these helps the stress of the situation a bit more. When I've read the book I'll let you there no way you can get some kind of medication for your anxiety when travelling as this helps me to. I will keep in touch lovely to talk to you lauren x

Hi nina I am half way threw the book, I'm so glad you recommend it, I cant put it down. Everyone who's going threw this should read it, theres a lot of insight into endometriosis, and how to manage and knowing what's going on in your body. I can relate to every thing in there. So as soon as I've read it all I now no what it is in more depth and am going to see my gp ,hopefully he will take me serious as I am aware of what it intakes. Thanks so much for recommending this book. Best wishes lauren x

Couldn’t agree more. The book is fabulous, but a lot of women are in denial and don’t know (or want to know) the full picture of endometriosis which I totally understand. It took me a while for it all to sink in, the first few pages made me cry. 😢 So glad you’re now more informed and can tell the GP’s what treatment YOU need, rather than the treatment THEY want to give you. Big difference. ❤️Nina.

Ano was really upsetting but nice to no other are going threw the same and there is a great doctor out there with a lot of insight and research thanks x

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