Can you relate?

[BrightonDawnTreader]

I’ve just signed up and written my bio, and wondered if there were ppl here that can relate? I’ll copy and paste it below

From when I started my period the pain levels were beyond anything anybody I met or spoke with had experienced. Every month I have to take each day I’m on my period: 3,200mg of ibuprofen, 240mg of codeine, and 4kg of paracetamol.

If I don’t, the pain has me writhing on the floor (1/2 dressed as I start to sweat), moaning loudly. I’m dizzy, close to passing out, sometimes ears ringing and seeming to seeing contrast colours, body tremoring, nauseous and I can puke.

I’ve had my period every month for 24 years.

I’ve been told by doctors I don’t have endometriosis as some of my symptoms don’t match, and an internal and external ultrasound came back negative. Doctors have suggested that I go on the pill instead (which I don’t want to do, because I want to know what is happening to me). I was refused referral to a gynaecologist a number of times. But finally, 4 months ago (31st Aug), a doctor referred me to a gynaecologist. Since I received that letter, I had a text message about 1 month afterwards to say that there are delays, and then nothing.

Having chatted to a number of friends that have endometriosis, I feel it’s likely that I have it. But I’m not sure. It’s just the pain levels that are the issue.

I’m here just to hopefully talk with people that may have a similar monthly experience (even if I don’t end up having endorsements!), and feel understood.

[ferns80]

Hi

Sorry to hear you’re in such pain with your periods and I can relate. I had endometriosis symptoms since I was 17 but just thought it was normal until I was 35 and came off the pill and my pain during periods got so unbearable that I was on a lot of pain medication and ended up having to go to hospital the last 3 times I had a period before surgery.

I was fobbed off a bit by the GP and just given more pain medication and they tried to pressure me to just go back on the pill or to try for a baby until one GP referred me to gynaecology because he suspected endometriosis. I think I was just unlucky with the GP I first saw.

Because of my age the better GP referred me through fertility as he said that would be quicker. It still took a few months and when I did see the gynaecologist I was also told I probably didn’t have endometriosis because I didn’t have pain all the time. (I didn’t at that time but I soon did.)

Im not a doctor but my understanding is that endo won’t always show up on ultrasounds and MRIs. I had a laparoscopy to diagnose and was then referred to a specialist centre. I also had to get an MRI done before I saw the specialist consultant. My endometriosis did show up on the MRI - I think because of where it was and the extent of it.

I also don’t think you’d have to have all the symptoms to warrant some investigation.

I hope you don’t have to wait too long for your appointment and they can help you get a diagnosis and treatment. There are some good resources on the endometriosis UK website that I think would have helped me before I went for that first gynae appointment. Just to explain all the symptoms I had that correlated to endometriosis.

[BrightonDawnTreader in reply to ferns80]

thank you so much! I’m really grateful for your time to write that. I think so often our pain is not shared by most women, so perhaps is not understood properly?

[Razina]

Hello

So sorry to hear you are going through this. All the symptoms you have described is what I had/ have when I am on period and I have endometriosis! It took me about 6 years to get diagnosed as they initially thought it was pcos since my sister has it. Endometriosis doesn't show on scans only when you have laparoscopy so unless they do every possible scans/ tests on you along with your history they won't do anything and I'm sure you know the NHS waiting time for anything is ridiculous!! I also have Adenomyosis too which was diagnosed late because of the neglect I got from the NHS but if it was discovered sooner then maybe I would not have been so bad. Currently I am on stage 4. I am happy to help with any questions if you have any.

[EternalSunshine87 in reply to Razina]

So sorry to hear your story. I know you're not alone in this. I didn't know anything about endometriosis until I came off the pill when I was 30. No real reason to come off it, but I'd been on it for 12 years and I thought perhaps I may want to have a baby in the future. Not that I've ever been particularly maternal, but I thought you never know. Well, that's when all my problems started. I had the most painful periods I'd ever experienced. I looked grey. I was in absolute agony, I felt so sick. I still dragged myself into work thinking I can't be off because of a period. I genuinely don't know how I did that. It's all a bit of a haze as to what actually made me go to the doctors in the end, but I'm so glad I did. It was a female doctor, someone I never had before and she immediately referred me to have an ultrasound and from there I'd have more ultrasounds and MRIs. It was the MRI that confirmed endo Stage 4 I believe and adenomyosis. I'm back on the pill. I absolutely didn't want to, but I thought why the hell am I putting myself through this when taking it again could help. And it has. It doesn't help with the pain, which when I have my period is hell, but I can manage how many periods I have so I'm not suffering as often. Work have also been very understanding. It's not the greatest solution, if it even is one, but my quality of life is better and that's all I can hope for right now.I hope you find what you need to help you.

[BrightonDawnTreader in reply to Razina]

ah! I really starting to think I must have it coz my pain levels are only shared with women that have endometriosis. I’m 36, if I do have it, and it’s gone undiagnosed for so long, might it affect my fertility?

[Moogie33 in reply to BrightonDawnTreader]

Yes, unfortunately it might affect your fertility. My endometriosis went undiagnosed, ignored and dismissed by doctors for approx 15 years. This was despite countless GP appointments, visits to well-woman clinics and even A&E when the pain became absolutely unbearable. At one point I begged a GP to give me morphine and was told that ‘period pain’ was a ‘cross I had to bear’. It was only when I struggled to conceive that a specialist finally diagnosed me with Stage 5 endometriosis. I required surgery and IVF before thankfully getting pregnant. I totally relate to the pain you are experiencing and urge you to keep pushing to see a specialist. The failure of doctors (NHS & private) ultimately led to my infertility.

[JOSANDY40]

Yes extreme pain becomes constant! I would think you do have Endo. Extreme pain stays extreme. Unfortunately the brain learns pain feelings. With any type of longterm pain the brain latches on to its memory and whether it's bad or slight the brain will magnify it. Endo comes in many forms: coloured types and invisible! Adhesions, scarring and distortion of organs with nerve damage.

Some people have Endo yet weridy have no pain or symptoms and may only find out perhaps during IVF or another operation for a different illness.

What I will say from my own serious form of the disease which my minor symptoms started at 10yrs old but by 14yrs had involved heavy 10 day periods and ovulation. By the age 18yrs the pain was worsening, longer over the mth. By 20yrs it was most days at somepiont. Diagnosed with IBS and Reflux! Though this was a wrong diagnosis! But .... it just became impossible to live a normal life. Heavy bleeding with painful clots, pain most days perhaps with 48hrs after the 12day period finished feeling extremely exhausted but little pain. Almost of uncontrollable bleeding tampons and towels for 6 days of the 12. When I was 24 I collapsed, falling down the stairs , unable to converse. My bowel was twisted and blocked. That's when the Endo was found. I had a life saving Op. By 32yrs my lungs would bleed every mth. I have had 6 operations. Took Danol for 15yrs then cos of steriod induced Pancreatitis. Went onto Zoladex. Tried IVF at 39yrs, but needed 4in cyst removed before. IVF failed. I managed to stay in my career til 42yrs but finally without sleep, pain and added Pancreas, digestive issues, Bowel emptying issues. At 57yrs the pain comes and goes but not as bad though I do take Morphine on and off. I can't walk without sitting. I can drive but not every day or more than a hr without pay back. Anything like bending, stretching, lifting isn't easy. I am disabled by the damage Endo caused, the longterm use of medication and by the 6 Operations!

[BrightonDawnTreader in reply to JOSANDY40]

I’m so incredibly sorry for your suffering. I didn’t even know that Endo could be so bad. Thank you so much for taking the time to share . It’s put my pain into perspective, but also encouraged me to push forward with the gynaecologist and get this sorted asap. Thank you so much x

[JOSANDY40 in reply to BrightonDawnTreader]

A Gynecologist, isn't a Endometriosis Specialist! Find a Endo Clinic or Endo Specialist the rest don't know enough about the subject! Most Gynecologists still follow old information they were taught. I remember seeing a Gynecologist who said ' You should have a Histo! I said so should I have my lungs removed too! I said have this disease in my whole body! ?!? Even after Menopause now Endo is there. The damage caused by Ops, Adhesions and Nerve damage!!!! None of the drugs I have taken have stopped Endometriois growing, they were meant too. Yes very slow but still now slow but active. I look young for my age, attractive but it's high hormones! I am so much better than at 30yrs. At 30 I looked very ill, not attractive and looked 50yrs. Now I am sexy, attractive finally, but still in pain, taking Morphine, looking 15yrs younger than I am! It's werid! The doctors got it totally wrong!

[bunmum2]

I'm so sorry that you're going through this, it does sound like Endo. to me, and I had ultrasounds which never did show my endo. so I dont think they are fully conclusive way of diagnosing, as far as I'm aware it still has to be diagnosed with a laparoscopy, which I always found stressfull enough. As far as doctors go, if I were you I would seek out a private GP and get referred to a private Gynaecologist. If you can find an Endo. clinic they might be helpful. If you cant afford to go private keep phoning the clinic you've been referred to, dont let them "forget" you. Good Luck. I also wonder if you've got other issues, it sounds almost like Epilepsy? seeing contrasting colours & body tremors? But this is what the Dr's for, so dont let them off the hook, I hope you get the help you need soon. Also have you tried Vitex Agnus Castus/ Chaste Berry? Its worked for me, calms everything down hormone wise, probably best to see a herbalist for that. All the best to you.

[BrightonDawnTreader in reply to bunmum2]

Thank you! Really appreciate your thoughts. I friend suggested I look at somthing that help the hormones too. I’ll have a look into Vitex Agnus Castus/ Chaste Berry. It’s also helpful to know that it sounds like I have Endo. Helps me feel that I’m not wasting the doctors’ time!

[Heloo85]

periods can be more painful for some! It depends on your tolerance for pain! Also, there’s a lot of inflammation that goes on naturally that surrounds the process of your period, so the womb can put pressure on other organs, like the bowel to cause constipation that can cause pain!

I wouldn’t be taking that much pain relief! I’d be looking at other ways to find relief, like a hot bath or a hot water bottle! Pain is only a perception! It can be caused by something, as in disease, or it can be caused by nothing, as in syndrome!

I hope you get your answers, but you do need to find a better management strategy anyway! If I took that much pain relief, I’d throw up!

Drink plenty of water leading up to your period and during!

Xx

[BrightonDawnTreader in reply to Heloo85]

Thank you. I definitely want to decrease the pain medication I have to take. Fortunately, I only need to be on it for a few days a month. But I agree, it’s not something that can be healthy for me. Thank you.

[Tarataboo35]

Sorry to hear how you are struggling. I had undiagnosed endo and Adenomyosis for over 13years. Mine got so much worse not getting diagnosed/treated. All my scans etc came back clear initially. I even had a clear laproscomy at one point (general gyna) I was passed around, misdiagnosed, gone from one pill to the next, told at one point it was depression. Until I located a knowledgeable GP and did my home work. I eventually had a diagnosis, several surgery, and for me a hysterectomy.

I would take a copy of the NICE guidelines with you to the GP. They now state that if endo is suspected you can demand to see a specialist. These are called BSGE centres, you can find your nearest via the BSGE website, go in with the printed info (i took my phone) and demand a referral. I did exactly that, and things changed for the better after that as I was under the care of the endo team. Had surgery and full MRI scans. I have stage 4 endo and had server Adenomyosis. Standard gyna didn't see any of that in a standard scan. Which goes to show you need specialists.

Endometriosis UK are also a great resource and have printouts you can take to your gp.

Keep demanding what you need, and don't take no for an answer. Good luck