I'm 26 and 3 months ago I was diagnosed with Endometriosis.
I started my period at the age of 13 and since then I’ve had agonising periods. I am unable to move for the first 2 days, regularly through up and have constant nausea. I made several trips to the GP and each time I was told it was normal and was prescribed with medication to help with the pain. Being a teacher, on numerous occasions I’ve had to teach lessons where I was unable to move from my chair (dosed up on pain killers of course) and relayed heavily on my amazing TA's to help teach lessons.
Over the Christmas period I had sharp pain on the right hand side of my stomach that wouldn’t go away. Again, I made several appointments with my GP, called 111 and even attended A&E because of the pain. Each time I was told I was fine. Eventually my GP sent me for a scan and I was diagnosed with Endometriosis. I have a cyst on my right ovary which is 10cm in size! I’ve been sent to an Endometriosis clinic but my next appointment isn’t till September. Next month, I have an MRI (I don’t know if that will be cancelled). The original plan was after my MRI, they’d schedule me in for surgery.
I’ve put myself on a strict diet that consists of foods that have anti-inflammatory properties (this seemed to be helping with my pain). However, I’m in regular pain. The pain comes in waves. Sometimes it’s dull, sometimes it’s a sharp pain and other times I have pain and bloating. For the past 3 days I haven’t been able to move let alone eat. I’m a strong willed person but I feel like I’m breaking. I can’t handle the pain anymore and I don’t know where to go for help. I sat in my living room last night and just cried. I’m due to get married in August but how am I supposed to have a healthy relationship like this? So far my fiancé has been very supportive but I currently have no interest in intimacy because of the pain.
I want to go to A&E, but I really wanted my surgery to be planned. The Dr at the endometriosis clinic told me my case was sensitive and needed careful planning. An emergency operation could lead to me losing my ovary and with this whole Coronavirus outbreak I know hospitals are already overwhelmed so I definitely don’t want to be operated by a surgeon who’s stressed. I know calling my GP will accomplish nothing because all they seem to want to do is quickly get rid of you. I love children and all I’ve ever dreamed of was becoming a mum. I can’t afford to go private but I don’t think I can live any longer like this. I really can’t wait till September to be seen by a specialist. I feel really lost and hopeless.
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Teacher_123
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It’s an awful thing to be going through, especially when there seems to be little help. I found it invaluable seeing a consultant privately after a year of hell. I ended up selling some things for surgery for confirmed diagnosis and treatment. I understand that’s not always an option, but initially the consultant offered the option of private or NHS. I went direct, no GP referral
If you need better pain relief still talk to GP, but maybe a different one. Good luck
I've spoken to my GP multiple times. Nothing they offered me has helped with the pain. If I was able to manage the pain I'd be more than happy to wait till September for treatment. Its just so hard. I really cant afford private because I just don't have the means to.
I was given Nefopam after the op, seems to help, along with paracetamol and sometimes ibuprofen. In December a GP gave morphine, I didn’t want to take at the time, but it’s been useful occasionally since the op in bad spikes at night. GP didn’t want to continue with Nefopam originally as it’s more expensive than codeine, but I didn’t want much opiate meds.
What I’ve found has helped recently is laxido for constipation when bloating and pressure kicks in, I don’t think the bowels are working particularly well.
I wish I knew why doctors have little or no understanding, the only GP I’ve come across was at out of hours and she was also a gynaecologist, she’d suggested the laxido.
Not sure if anything helps, hope you can get something sorted very soon.
I can understand your situation very well as I have felt same condition twice in my life. First it was in 2016 and I had surgery in April 2016. Even though I was on treatment, The cyst reoccured in 2019. Currently, I also had excruciating pain due to chocolate cyst (7 cm) and stage IV endo. Before that, I had one leproscopy as well for chocolate cyst but it reoccurred. I tried every pain killer and injections but all in vain. After extensive research on internet, I found one Homeopathic clinic in India, i.e. Welling Homeopathic. It may sound bizarre but my pain was almost gone within 1 week after starting their medicines. The intensity of the pain was reduced after taking 3-4 doses. I am not promoting them, I am just sharing how I got relief from pain. Although I don't have any pain now but the cyst is still there and I was told that eventually, this will also go away. They suggest some yoga poses, supplements and diet plans along with homeopathic medicines. Here I am posting the link of clinic wellinghomeopathy.com/
They give online consultation also. I am taking online consulatation as I don't live in India.
I wish you improvement in your health. I can really relate with your current situation. I have been in this hell twice.
Hi there my situation is slightly different though I hope what I’m about to say is helpful last April I had sudden pelvic pain and couldn’t get out of bed it started to interfere with my daily life I rang my g.p who said I have a cyst still I was in chronic daily pain in the end they put me on a pill it only made my pain more chronic so I started researching endometriosis and all my symptoms matched the pill wasn’t working for me so I troweled through a million books and websites I started managing endometriosis with diet and a range of supplements you can see from my previous posts I’m now pain free almost all the time and back to being able to mop the floor again which I couldn’t do before.it even used to make me feel nauseous and I was bed ridden I am still waiting for a referral for a lap but when it first started I was desperate for a lap I wanted to go private but just didn’t have the money I tried everything to save the money but it just wasn’t their I had a private consultation only who said I do have endometriosis and am now on the referral list the waiting is agony if you have no relief I know I would have gone to a dark place if I hasent have found a way to manage it naturally ,also the pain was so bad I cancelled my wedding and had all the thoughts you have it really is an awful thing to go through when it’s not manageable x
I've been researching and I've been taking supplements that have anti inflammatory properties such as: vitamin D and Omega 3. I also include chia seeds, flax seeds and turmeric into my meals. I been eating pineapples and blueberries too which apparently have anti inflammatory properties. However, I hardly slept last night due the intense pain I had. The pain didn't stop until I eventually threw up.
Hi, I feel for you truly and I want to let you know to stay hopeful and strong because you will get though it. Much of your story sounded like mine exactly. I was not able to function at one point and went to 23 doctors of all specialties only to be called crazy or misdiagnosed or offered ineffective treatments for endo. Eventually I got excision surgery (had to pay for the whole thing) but it was worth it because it changed my life entirely in just one day. I suggest joining Nancy’s Nook on Facebook and reading through the files.
Another thing that really helped my pain is the autoimmune protocol diet.
I am also in the same situation. They found a cyst (around 4 cm) on my left ovary last year and I didn't have symptoms until December. In February I got diagnosed with endometriosis (or they think it is that) and I was supposed to see a specialist two weeks ago but it was cancelled. My cyst already ruptured once so I went to ER and they gave me an IV and sent me home with painkillers that don't help at all. I am in constant pain. It is in the pelvis on the left side, some days are better (just pressure), but usually it is quite strong. I can only wait for this crisis to pass and hope it doesn't get worse.
I’m just so sorry you are going through this, it’s awful but I want you to know you aren’t along. Absolutely you need a specialist surgeon! At one stage I also had at 10cm x 10cm endometrioma on my left ovary which was attached to my bowel. I tried everything you could imagine and committed myself 100% to a vegan diet, Chinese medicine, acupuncture, supplements, supplements and more supplements to no avail - I think when you’re endo is that bad you just need surgery, any lifestyle changes won’t get rid of the existing growth. I’m so sorry this Coronavirus has put a hold on future surgery, I had to wait 11 months and 14 months for 2 of my surgeries and other surgeries happened in less than 6 months. I complained to PALs for both the 11 and 14 month wait as I had severe bladder and bowel endo, was taking morphine and bed bound. The longer the wait the more likely I would have needed a stoma. PALs helped to get things moving but what with the Coronavirus I don’t think they could do much now, I have the capacity. Just remember, this will pass, you will have surgery and you WILL be in less pain. During my very bad episodes of this disease I have accepted it is what it is and reminded myself to be kind to me, do only what you can and don’t feel guilty for what you can’t, you are going through so much right now, physically and mentally and it’s exhausting. You will get through this period and things will be better xxx
Hi Teacher_123, I am so sorry for what you are going through. I have recently graduated as a teacher and have spent the last 11 years in agony before finally being diagnosed this year. I had an MRI in February, just before lockdown and have found out I have stage 4 endo on my bowels etc. Because of the amount of pain I experience when on my period, like you, I also can't move and spend endless days lying on the sofa with a hot water bottle. I am waiting to have my first surgery but because of Covid it probably wont be until next year. I would love to be able to go straight into teaching full time but it's my endometriosis that is stopping me and have had to resort to supply work for the meantime, whilst I wait for my laparoscopy. Is there any support in place for teachers with endo? Have you been able to have any time off when your endo has been really bad? I would really appreciate any advice you can give me
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