I feel alone

[abbyburton27]

Hello, my name is Abby and I’m 16 years old. I’m being investigated for “severe endometriosis” as the doctors and nurse put it. I’ve recently just joined this app to get any help and advice that anyone can offer as no-one of my friends or family has it or understand what I’m going through, leaving me to deal with the Physical pain of this but also the mental instability of feeling alone. I’ve been dealing with this horrible experience for about 2/3 years now and I’m January I’m getting the Laparoscopy because everything else that I’ve been out on and tried had either failed or made me worse.

[Sunflower1968]

Hi Abby firstly I hope you will feel less alone as this site is full of endo warriors like yourself. My daughter is 18 and is under investigation too. I had severe endometriosis and adenomyosis and it can be hereditary.

My daughter has found by taking “yasmine” (pill) it has really helped her symptoms, I’m not sure if you have tried that? It has a different type of progesterone to other pills and you may have already tried it. It took about 3 months to take effect she took it back to back (on the doctors advice) and then had a break it has helped my daughter.

I hope you receive lots of support, Endometriosis UK often have webinars and if you sign up for one you can ask questions, if you contact Lynne at Endometriosis UK she may even be able to send you recordings of some previous ones they are really helpful.

Please know you are never alone, you can post lots of questions and also reply to other people’s posts with your thoughts and questions too.

Take care and keep us posted on your journey and feel free to ask me anything anytime x

[abbyburton27 in reply to Sunflower1968]

Yeah I have, I’ve recently been put on norethisterone tablets because I was heavy bleeding for 3 months. Completely bleeding through my sheets and clothing, going through 2 boxes of tampons a day. Thank you for your reply it’s already making me feel a lot better knowing there’s lady’s going through it too x

[Lex4]

Hey Abby, Please don't feel alone. I know the uncertainty before a laparoscopy feels quite unsettling, but to be honest I was quite relieved after the formal diagnosis because it was a moment of 'I really wasn't exaggerating the pain/not being strong enough' that gave me something concrete that I could read up on and get treatment for.

I want to say well done for getting to this stage when you're so young - you must be really good at describing how you're feeling and proactive about your health. I really regret almost 20 years of being told to take more ibuprofen, then more cocodamol, try a different pill etc etc and wish I had spoken up more about how bad my period pain was. I too have severe (stage 4) endometriosis - I'm right now a few days clear of a second laparoscopy to try and remove some of the endometriosis but it's quite complicated. I'm no expert, but I'm really happy to answer any questions, including the small, awkward ones that no one tells you about (for example, after the surgery you'll have some very small dissolvable stitches covered by dressings, and one of those may be around the top of your pubic hairline: I wish someone had suggested shaving or trimming down there a little bit to make taking the dressings off less like a badly-done wax!). When I went in for the Laparoscopy I'd never been in hospital for anything, or really very sick, so it was all quite unfamiliar - if there's any question, no matter how small, that I can answer to help make it less daunting, please ask.

[abbyburton27]

Yep that was the same for me, I’ve been in and out hospitals and doctors since I was 13! I was told it was acid reflux and everything under the sun so I kept a diary of what was happening and I’ve tried so many different treatments and the laparoscopy was my last resort but it’s got the the point I’ve had to leave my work and college for the time being as I just cannot get out my bed x

[Pinkyandthebrain]

Hi Abby, I really feel for you and I hope that being here helps you realise you aren’t alone.

It’s very tough dealing with this pain at such a young age, especially when no one around you understands what you’re experiencing.

I want to echo Lex4’s comments and say well done to you for speaking up and getting people to listen; I wish I’d been as articulate and proactive as you when I was 16.

I hope your laparoscopy goes well and gives you some answers; medical procedures can be upsetting and intimidating but you have nothing to fear. Just make sure you have some good things to watch and read during your recovery

In the meantime, this is a great place to come and vent/interact with other people’s posts!

You’re not alone x

[Angellouise]

I’m so sorry you are going through this. My daughter has been going through this for four years and she is only 18 right now. She gets heavy periods and bad pain. She’s had laparoscopic and many ultrasounds and nothing was ever found. Tried the lupron shot, depo shot, other birth controls, and now has the Mirena iud and is still in pain as of 6 weeks after. The doctor says it could take three months. I have also heard eating anti inflammatory foods can help ( fruit, vegetables, less gluten and sugar ) lower inflammation. I hope you find the answer, I know how horrible it is physically and mentally.

[abbyburton27 in reply to Angellouise]

Yeah I’ve had the pill, implant and the coil for about a year now. I’ve been on 13 different diets but nothing works at all for me x

[Angellouise in reply to abbyburton27]

OMG that’s awful. Too bad you can’t go to the Mayo clinic , they are smart there but it’s expensive

[Drimmer]

Don’t feel alone you have us. I had Endo for years and ignored it and finally got diagnosed with the labroscopy surgery two years ago and I am 35. I felt much better after that and have remained on birth control to control it. It’s sucks to have but your young hopefully it will be better after the surgery. Hang in there ❤️

[GrittyReads]

Do you know if your laparoscopy is just a 'diagnostic' laparoscopy … or if they are planning to remove any of the Endo?

It's just that … if the Endo is severe, and is in difficult, or 'hard-to-access' parts of your abdominal cavity, then it should not be removed by a general NHS 'Endo Team' who are not fully skilled in handling the 'hard- to- access' or 'difficult to identify' types of endo.

In fact, they are absolutely, honour-bound to refer such more difficult types of Endo to 'BSGE teams' who have special consultants 'on-hand' to remove difficult Endo - eg if it is on the outer walls of your bowel, or hidden deep in the 'Pouch of Douglas'.

I hate to have to be the one to sound this warning, but it all should have been explained to you. However, if you are already being seen by a BSGE Team, then that is okay.

Meanwhile, if you are being seen by ordinary Gyanaes, who are non-BSGE, then they should offer you the option of just an exploratory laparoscopy, first, so you can go on to see a more experienced Endo gynae, in a BSGE Centre, if the type or position of your endo is difficult.

Please do phone up the experts at 'Endometriosis Uk' and talk to them.

Hope this helps and that it all goes really well for you

[GrittyReads]

PS

If you are in the UK do read the 'NICE Guidelines' on Endo.

See the answers to the post (below) by GeorgiaLouise.

Gritty

[PaoPetite]

Don’t feel alone darling! We are all here for the very same reason, to be understood and we are all helping each other! Wishing everybody a beautiful time even when we are tormented by the pain.

Love to everyone ❤️

[abbyburton27 in reply to PaoPetite]

For the past couple of years, being in and out hospital and having to quit my night shift job is honestly horrible. When it begins to effect the mental health it even scarier having nobody to speak to but after finding this app the other day with everyone’s amazing replies it really truly opened my eyes about things and I don’t feel as alone anymore ❤️

[Marie3811]

Hi Abby I have endometriosis stage 4 and I know how you feel. It can make you feel isolated but these forums are very uplifting and supportive so please don’t feel alone wishing you all the best and continue to share you journey with us ❤️ Merry Christmas and Happy New Year

[Charwindsor]

Hi Abbie, I hope that reaching out on here has made you feel a little less alone, just to know there are others going through similar things as you. Im 24 and had my laparoscopy a week ago, so I’m just recovering at the moment. If there’s any questions you have regarding the procedure or anything in general (nothing is ever TMI, the more we all talk about symptoms and experiences the quicker hopefully we can break the taboo in society as there is so many of us suffering with endometriosis out there!) I’m sure you already have done but I use an app called Clue to track my symptoms etc (there’s also a part where you can create your own bits to track ie. specific pains etc). I found this really helpful just to help me notice what pains I was feeling and where to try and explain to close friends and family what I was enduring on a daily basis. Although I can totally empathise that unless you’re going through it then others may find it hard to understand the full picture and how debilitating it can be. I hope you have good support around you, but also that myself and other users on here can help support you in anyway that we can too. I found endometriosis org uk very informative, they have a website and forum and also an Instagram account which is always posting good content. I hope you find some answers soon and as I said please don’t hesitate to ask any questions if you’re worried or just want to know anything more regarding the laparoscopy as it’s happened so recently for me and is very fresh in my mind. Also, merry Christmas ⭐️

[_EndoWarrior_]

If your drs and nurses suggest from your symptoms and past treatments that you have ‘Severe Endometriosis’ you should be referred/seen by a BSGE Endometriosis Specialist as a general gynaecologist won’t have the experience needed to identify Endometriosis and treat it. If ‘ablation’ is mentioned, this is normally a ‘Red Flag’ as excision is required if you have severe Endometriosis. All depends if you are having a simple diagnostic laparoscopy or laparoscopy with treatment.

A Laparoscopy will hopefully make things a lot clearer and diagnose your severity ie. Endometriosis Stage.

I suffered with painful periods and heavy bleeding etc from 11yld. I was put on ‘Yasmin’ after my first lap (by a general gynaecologist) and Endometriosis diagnosis at age 25 (in 2000). They performed ‘Ablation’ which I now know did not treat my Endometriosis.The combined contraceptive pill did help with the pain and bleeding but doesn’t stop the Endometriosis growing. With any Combined Contraceptive Pill there is a risk of blood clots which is what happened to me in 2010. The pill was not an option thereafter so my Endometriosis progressively got worse over the next several years.

Diagnosed with Stage 4: Deep Infiltrating Endometriosis, Uterine Fibroids and Adenomyosis in 2017 via 2nd Laparoscopy (by another general gynaecologist)

The only thing she suggested was a hysterectomy which does not treat Endometriosis as Endometriosis produces its own oestrogen. This is what I learnt when I joined ‘Nancy’s Nook Endometriosis Education Group’ and did my research. I also found a Nook Surgeon (an Endometriosis Specialist who had training in minimally invasive surgery) near me who was still practicing in the NHS.

In 2018 I had a MRI to find out the spread of the Endo which then led me to make some important decisions, but informed decisions after doing my research.

I then had major surgery with my chosen Nook Surgeon this year and in the recovery stages still.

Do your research. Learn as much as you can about Endometriosis. Google Endopaedia. Also join ‘Nancy’s Nook Endometriosis Education Group’ on Facebook which will provide you with research files/units you can read through about all things Endo. It really empowered me and made me more confident in asking my gynaecologist the questions I wanted answering a d helped me decide which path I wanted to go down, treatment-wise.

I must clarify that it is not a support group simply an education group. You will need to answer a few questions to join as it’s a closed group and you have a week to read the introductory units before commenting or ‘liking’ posts. It’s well worth it. I’m still learning.

Hope this helps. 🙂