Hello, been back and forth to the doctor for 2/3 years changed doctor 3 times. Looking for advice. I’ve had extremely heavy periods sometimes lasting 2/3 months at a time then away for a few days and then back. (tmi) pads tend to need changed every 1/2 hours or will leak. The pain makes me sick and dizzy most times and I just want to sleep and lie on a cold surface. I’ve tried multiple different contraceptive to try regulate periods and currently on the implant nothing helped. The pain in my lower back and pelvis during the time just before and during periods is agony.. but the worst pain is my legs and stomach. my legs swell like nobody’s business and I cry with the pain in my stomach and my legs. I’ve been passed from puller to post. I’ve been with the same partner for 2/3 years and sex can be so painful and can cause extreme bleeds the same as smear tests, how did you get to the bottom of what was going on? Anyone been in similar position before I’m 24
First post looking for help?: Hello, been... - Endometriosis UK
First post looking for help?
I was messed about for years and eventually ended up having a full hysterectomy due to having stage 4 endometriosis, my advice to you is to ask your dr to refer you to a gynaecologist or even a endometriosis specialist gynaecologist ( check to see if there is one at either your local hospital or a nearby one ) I was willing to travel but at the time I was eventually referred to one by a gynaecologist at our hospital. You should not be in that much pain or bleed that much or experience pain during sex etc it is NOT normal and needs investigating as I don’t know if you plan on having a family in the future and I really don’t want to scare you but the longer endometriosis is left untreated the higher chance you will have problems conceiving or you can become infertile. It makes me so angry that drs do not take this seriously! I was told it was my bowels etc etc and I had scan after scan and I’ll be honest with you it wasn’t until I insisted that something was done and I had a laparoscopy that they found I was a mess inside with everything stuck together from the adhesions that endometriosis cause. I was in surgery for 7 hours!!! luckily I had an amazing surgeon she managed to do all of that with keyhole surgery so no big cut along my tummy, plus I didn’t need a colostomy or any issues with my bladder that’s how bad it could have gotten. Sorry if this sounds scary but that’s what happens when endometriosis goes undiagnosed. I even wrote to my local MP as even after my diagnosis I was being messed about with a date for surgery and I was in so much pain and now been on morphine for a few years and ending up in A&E a couple times each month for pain management I had enough. So you need to keep on at the drs and push for a referral to see a gynaecologist as all your symptoms point to either endometriosis or fibroids or even both!!!! and these things need to be looked into and treated, I still have bits of endometriosis that they couldn’t remove as it was too risky but omg it’s changed my life but you are a lot younger than me and the sooner you get seen and diagnosed the better. Too many women go years being messed about or not taken seriously and it leads to so many problems that could have been avoided. Don’t take no for an answer
Hope in some way I have helped or given you the confidence to kick some butts 😁 I really do hope that you get the help you need and I hope I’ve not scared you too much. I know they might say due to this covid etc but you still can be referred for when they do start seeing people again and I’m sure they already are
All the best
Ronnie 😊
I’m so sorry to hear this is girls have it tough, I’ve decided to go private and have a consultation with gynaecology next week! Thank goodness I’m so nervous and scared but it’s best I try and get it sorted out and get to the bottom of it! I would be devistated if I could never have a family! Not that I’m planning now but certainly in the future! An older female doctor just told Me not to cry when I told her how horrible this was and blamed my weight on it all. Yes my weight is a factor but it’s not the sole factor. I had become a little scared before as there’s history of cancer in my family and cervical cancer so I’m not leaving it anymore as it’s scaring me. And I’m 24 I shouldn’t be having the fear to have sex or what I wear or worry how I look as my legs are hugely swollen. Thanks so much for your message. I hope your keeping well
Meg xxx
Im so sorry to hear this is happening to you. Generally endo is discovered via exploratory surgery, usually a laparoscopy. You could ask your GP for a referral to a gynaecologist. That’d be my recommendation. Sending you the biggest hugs! X x
Hi, I can very much relate. I’m 29 now and last year I had a hysterectomy. I went through the same problems heavy bleeding , agonising pain never knowing when I would be off my period and then the later issue for me was that sex became painful. I’ve suffered with gynae problems from the age of 16. Was never listened to and they just try to brush you off with the pill or the coil. You have to push. Now my advice is go to your GP and demand an ultrasound. Do not leave till they book you one. It is the one way you can find out what is going on. That way you can get the right referral. No pill or fucking coil will you give you a diagnosis. The hysterectomy was my last resort but wow it’s changed my life. Please though don’t think this will happen to you it might just be you need some fibroids removed etc. Please feel free to message me anytime and if you need further help. I’m sorry to hear that you are having to jump through hoops to get help but sadly it happens all the time. You have to be demanding these days in the NHS take it from me as I’m also a nurse!
Oh my that sounds scary! I’m glad to hear you’ve got to some sort of answers mines I kind of ignored for 3/4 years and always left.. then I put a dress on for a wedding That I was adamant I wasn’t wearing but my mum was like show me it on it will be nice then went OMG your leg and I said yeh.. and she’s like u need to go to hospital Megan that’s a blood clot I said nah mum it’s not it’s just swollen it’s my periods and my stomach pain don’t worry it’s been like this for years I had to then go to doctors back and forth for 2/3 years now tried tablets to calm the bleeding, been on the pill then nothing then the implant and now they won’t take that out so now a different pill which none help.. but nothing to help the swelling in my legs or the pain in my stomach or lower back, the dizziness, sickness and headaches are just the norm with the long periods most of it’s Painful but the last year been unbearable. Hopefully have some answers soon as I’ve decided to go private! Xxx
This is ridiculous. It really is. I feel for you. Someone should have taken steps to help you long ago!
I know it isn't an answer to the issue, but I suggest directly requesting the following from your GP:
- For a list of you symptoms, which you prepare and take with you, be scanned on to your record.
- A prescription for Tramexamic Acid, or at the very least Mefenamic Acid. Both hell to treat excessive bleeding, and Mefenamic Acid will act as an anti-inflammatory. I started with Mefenamic Acid and then added Tramexamic Acid. It took a month or two of being on the Tramexamic Acid before things got better.
- Blood work for iron levels, B vitamins and any form of cancer that may be related to your symptoms
- An ultrasound to check for cysts
- A referral to a gynaecologist.
If they decline any of the above specifically ask why and ask that it be noted on your file that you have requested it and they have declined your request.
If you continue to have no improvement in your care contact PALS and log a complaint, detailing your full history of trying to seek help with your untreated symptoms.
Good Luck. You deserve to be heard and to receive care. If any of this is difficult for you ask a friend or family member to come with you to help, either as support or to help represent you as needed.
Hello, it’s just horrible. I took them but as soon as I stopped they would come back within a day or so. It’s so strange. I was given them for a week I’m sure, iron levels seem to be ok. Thyroid was under for a year but nobody told me now it’s fine. Going private to gynacology for scans on ovaries and womb and gynacology consultation, pretty nervous but I just want to know what’s happening thanks for the reply xxx
Do you mean you were given the Mefenamic Acid and/or Tramexamic Acid for a week? They are full time prescriptions for me. I've been prescribed them for two years or so. They treat the symptom, but don't cure it.
Yeh tramexamix acid, really yeh that’s what my gp dud say ru be fair xx
So girls went for appointment explained full situation, the girl asked me if she could have a look and see she tried using the thing for smears but it was agony. She eventually used her finger it was awful. She explained she can feel that my ovaries are not moving at all, she’s pretty sure it’s endometriosis and possibly PCOS. I need to lower my BMI and go back to her. Came out of the hospital and burst into tears.. partly at I knew it wasn’t all in my head and partly that this is a long road ahead. The woman explained they’d need to do the op and see how bad it is and then go from there.
Don’t give up. Try and keep to same doctor or at least in same practice. Keep pushing them ask for second, 3rd etc opinion. You need something to stop the bleeding keep a diary and take photos as evidence. I’m 54 had problems all my adult life and no doctor would take me seriously. I eventually followed the advice I’m giving you until recently I eventually got zoladex injections. Take an iron supplement and other supplements and eat foods that will help keep your levels up. I think it’s your age that’s against you they don’t like it when women are so young. Talk with your partner re sex and try other things (nothing kinky) what you are both comfortable with. Do things with your partner you both like to feed positivity into your relationship - hobbies, movies, things you’re both passionate about maybe wildlife etc
Totally! Really I hope your feeling much better. There’s nothing wild for sure it just happens randomly during sex and it’s horrid. Yeh we do lots together which is very good and he’s very understanding it’s not just all about Sex so I have to appreciate him greatly xx
I’m sure he appreciates you too just keep remembering to tell and show each other. I’m recovering from complete hysterectomy. I had surgery a week last Wednesday and got out of hospital last Saturday. It’s been a real challenge but I’m glad to be on this side of it! While I was in I came across a few women who were on the next in their numerous procedures. Keep going don’t give up!
Sending u lots of recovery hugs your way hun! I will keep you guys posted ❤️
Great. Thanks ❤️
So girls went for appointment explained full situation, the girl asked me if she could have a look and see she tried using the thing for smears but it was agony. She eventually used her finger it was awful. She explained she can feel that my ovaries are not moving at all, she’s pretty sure it’s endometriosis and possibly PCOS. I need to lower my BMI and go back to her. Came out of the hospital and burst into tears.. partly at I knew it wasn’t all in my head and partly that this is a long road ahead. The woman explained they’d need to do the op and see how bad it is and then go from there.
Oh! It may be a long road but at least you’re on it and getting some answers. Just take one step at a time and try not to over think it and stress. I’d do what research and prep I could just to be as informed as possible ❤️
So girls went for appointment explained full situation, the girl asked me if she could have a look and see she tried using the thing for smears but it was agony. She eventually used her finger it was awful. She explained she can feel that my ovaries are not moving at all, she’s pretty sure it’s endometriosis and possibly PCOS. I need to lower my BMI and go back to her. Came out of the hospital and burst into tears.. partly at I knew it wasn’t all in my head and partly that this is a long road ahead. The woman explained they’d need to do the op and see how bad it is and then go from there.
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