Possible endometriosis?

[CourtneyLeigh3]

So I have been suffering with very painful periods ever since I started my period at the age of 12/13. My periods have always been excruciating with symptoms such as: bad pack pain, shooting pain in my legs, severe pelvic pain, sweats, irregular bowel movements, heavy bleeding and clots. My periods only ever last 2/3 days and are pretty regular considering I am on no form of contraception. I have been on multiple pills and the implant to which I bled on constantly and needed removed. I have passed out multiple times due to pain with my periods with the most recent being 5/6 months ago where I woke up in excruciating pain, passed out on my bedroom floor and could not stand due to the severity of the pain in my pelvis and legs, I had never felt pain like this. I was told that it was best to go on the coil, and was made to feel like it was my fault that I was not on any contraception and that this was silly due to being in a relationship although everything I tried had complications, to which I was told that this was not a good idea by another doctor when I went back to the doctors after I passed out. I went to my doctors twice in the last 6 months due to this pain, as I used to have a zero hour contract I would make sure I wasn’t at work on the days I was in pain. This doctor looked confused as to why I had a same day/emergency appointment because “I’d been dealing with this pain for many years” which is exactly my point! It affects not only work but everyday life, sometimes the pain is so bad I cannot get out of bed/off the sofa. Now I work 9-5 I have had to take multiple days off sick due to my periods. I have been referred to a gynaecologist as my doctor was surprised I had not been referred sooner due to my symptoms and mentioned endometriosis being a possible cause, but the hospital is backdated with patients and I have been waiting nearly 3 months already with no update and I am starting to feel the pressure at work, they are trying to help me with my situation but do not feel they fully understand. Do you reckon this is endometriosis? And what is the process for gneacology and treatment ?

[Christin_a]

Hello Courtney.

Yes this sounds to me like it could be endometriosis, but I'm not a Dr but they are all symptoms.

The process for getting diagnosed is to be referred to a gynecologist, they MUST have a specialist interest in endometriosis this is a requirement for anyone suspected of having endo. They will go through your symptoms. It can be useful to go in prepared with a list of what you experience what pains when , what you've tried etc. They generally will do an internal examination to check for anything obvious. They should offer to do a laproscopracy which is surgery which is the only way to diagnose it, it is key hole so they can take a look and if it's found they should remove it, it should be by excision.

Do you have prescription pain killers for when you are on your period? Just wondering if maybe you need to review it with your Dr to try and stem how much time off you have for your periods, it can be a case of trial and error to see what works but can really help. Also is your job something that you could possibly do from home on those days? As I have an agreement with work to try to work from home the days I have flare ups/high pain days so they don't count as sick days.

[CourtneyLeigh3 in reply to Christin_a]

Hey Christina thank you for your reply! I’m hoping the gynaecology department does specialise in endometriosis as my doctor referred me to them? In a way I kind of hope it is endometriosis, just so that I can get something sorted. So I’ve been given mefenamic acid in the past but this doesn’t help, now I’m on naproxen but this is difficult to take whilst working as it makes me drowsy and I have to speak to people on the phone all day, I’ve also tried cocodamol with the same effect and normal paracetamol/ibuprofen won’t touch it. So I can always ask for the laparoscopy and they will agree to this even if they do not see anything in the scan or internal examination? Thanks for the idea of the list that would be very helpful. Unfortunately I can’t work from home with my job, that would have been so handy!

[Christin_a in reply to CourtneyLeigh3]

Yes so when you know who your appointment is with check that they have a special interest in endometriosis. As gynecologist can specialise in alot of areas like endo, but some concentrate on oncology, others in births etc. The NHS guidelines stipulate that anyone suspected of having endometriosis must be seen by someone with a specialist interest. You can usually just Google them and check what their speciality / interests are.

Well is good that you gp is trying you on different things as sometimes that's a battle. Yes unfortunately some of the stronger stuff do have side effects and its a catch 22 on taking them to not be in pain but suffering side effects or not and being in pain. It is a little trial and error to see what works for you.

Yes a clear scan does not mean you don't have endo infact endo most of the time doesn't show on a scan. So the only way to confirm if you have it or not is by the laproscopracy.

You should be able to Google the e NHS guideline/ treatment pathway for endometriosis which should give you plenty of information too.

Fortunately in the last year this has been updated which makes getting diagnosed alot better/ easier to follow what the next steps are etc.

It may be a little early to get occupational health involved for you work as you don't have a diagnosis, but maybe suggest it to them. They are independent Dr's who write a report about how your suffer etc for your work to understand more and if they think it's suitable an think you could be covered by the equality act they can ask on your behalf for some adjustments to aid in your coping at work. I've just had my appointment and my case is covered under the equality act, so I've asked for a couple of things that would help. It was only this week so work have not seen the report yet so haven't agreed anything butbi have heard good things from others.

But if that's not an option as you're not diagnosed yet what could be useful depending on how comfortable you are with discussing it with work is explaining that you're in the process of trying to get a diagnosis but that the gp has suggested endo which is a chronic condition and that it takes a while to get a diagnosis as the only way is through surgery. Obviously it completely depends on how comfortable you are sharing this with either the HR department or your boss. I found it useful to be so open with my work so they could understand better why I had so much time off and that just because I had seen a specialist didn't mean I had a diagnosis and had to wait for surgery etc.

[CourtneyLeigh3 in reply to Christin_a]

Brilliant thank you so much for your help, I feel a lot more informed after reading your post and also having a read through this site to see other people’s journeys and how it has affected them also. I’ll have a little look on the website and see what they specialise in. Work do know that it is possible endo and have been helpful by linking all my sicknesses together. Thank you for mentioning occupational health as I wouldn’t have even thought about that, I just hope the referral will not take too long as it’s such a struggle each month.

[Honey74]

So sorry to read your post. It took me too many years and many problems till i was eventually diagnosed. Only one GP was good enough to explore my symptoms and i too felt blamed for wasting tge NHS time. I hated how my endom affected my life and career. I was due to have a hysterectomy at 28 following unsuccessful IVF explorations found how extensive my cysts and lesions were. I was so hurt at the way i was treated throughout, i put the op off. And hey, 8 yrs later i fell pregnant. I would just say 1. Get yourself WELL informed. 2. Take a buddy to appts. 3. Be calm and nice to any health professionals (!). 4. Keep a detailed diary daily of your symptoms (u can get a diary off the endo site) but include pain sites, bleeding, mood, sleep, diet, and include social/family/relationship and occupational effects of yr menstruation. Take heart, there r thousands n thousands of us. I now have a coil past 2 yrs, which has helped quite a bit. I am 50. And was a nurse myself 18 yrs. Best of luck and don’t let others lack of knowledge effect you. Total sympathy n empathy you’ll find on sites like this.

[CourtneyLeigh3 in reply to Honey74]

Thank you so much for your reply! Exactly it feels like I’m the only one with this that I know, no one else I know struggles this bad and I feel like people may think I’m over exagerating but the pain is horrendous. I’m on day 3 of my period now and was up at 5, sitting on my bathroom floor for nearly an hour I was in so much pain it’s ridiculous. And as you say you just get passed round the system so much? Considering how much you have gone through too! That’s why I hope it is endo just so then I know i can get some sort of treatment plan sorted. I’m just scared if it is endo my mind automatically thinks “what if I can’t have children later in life?” . I will definitely keep a diary from now on, and also take someone with me as I always feel a little intimidated/awkward in that sort of environment. People like you have been so helpful on here, thank you so much!

[ccfd9 in reply to CourtneyLeigh3]

At the Endometriosis and Fertility Clinic Dian Shepperson Mills specialises in treating endometriosis with nutrition, many years ago she wrote a book on it and is a world expert on the subject. She has attended nearly all the world endometriosis conferences and researched into the subject.

Try cutting out wheat and gluten from your diet, 80% of endometriosis sufferers get relief from their symptoms, but you have to keep it up for at least 6 weeks to see a benefit. Some of Dian’s patients get immediate relief while others have to wait for their period. So just a little wheat can cause a painful period a few weeks after eating wheat.

Good luck

[CourtneyLeigh3 in reply to ccfd9]

Thank you for your reply! I would never have known that, no harm in me trying that if it’s goint to help! I’ll definitey have a look into it