I feel like I have Endometriosis but I’m not being listened to...

[EmmaW1704]

Hi, I just wanted to get some help, support or advice as since I started my period and right before I’ve been in excruciating pain. It was only about 10 months ago the pain seems to have gotten worse, I’ll be up at 4 in the morning feeling as if I’m dying. I struggle to breathe, move and want stop crying. I felt that this wasn’t normal and started searching for what could possibly be wrong with me. I went to a doctor who told be that I’ll be fine as long as I’m taking Ibroprofen and Paracetamol, so I took his advice went home and started to take them but they just didn’t seem to work so I went back to the doctor and was prescribed the progesterone only pill. A few days after I started on the pill I started to bleed heavily and got the same pains I was having before. After this I looked up what could be causing me the pain and bleeding and I came across Endometriosis, I talked to my mum about it and turns out she had it but not severely. After finding out she had it I was sure she’d understand and help, but yet she told me that “it’s all in your head, your overthinking and being a bit dramatic”. No doctor or anyone seems to be acknowledging what I’m saying and are yet giving me the same advice over and over again which is clearly not helping. I feel unable to do normal activities from about 2 week before my period starts and whilst in on it.

I need help and I don’t know what I can do

[angiecxx]

Hi. I'm sorry you are not being listened to. Please keep going back to the Dr's, maybe possibly ask to see a gp who specialises in gynecology. When you go list down all the symptoms you have which are linked to endometriosis, and do not leave until you are satisfied with the result and that you get something to help with the pain and bleeding. You need to be referred to a specialist who can investigate further. As for your mum not supporting you,knowing how bad endo is just angers me so much. The amount of times I as well as other women with endometriosis have been told and heard ( it's all in your head, you look fine, it cant be that bad, etc etc) I'm afraid there are always going to be ignorant people as they have no idea what endo is and what is does, it's so debilitating,but the help and support is out there and also on here 😊😊. Sending you hugs your way my lovely 💛💛xx

[EmmaW1704 in reply to angiecxx]

Thank You x I’m going to the doctors on Friday but I’m very sure that they are only going to tell me to carry on with this pill I’m on, I’ll take your advise and list all the symptoms I have and see how it goes

[angiecxx in reply to EmmaW1704]

If the pill isn't helping then make it clear you don't want to carry on taking it. Remember there's always people on here who will and can support you. 💛💛xx

[Barnyowl]

Hi Emma,

I'm so sorry you're struggling with pain.

From your post, it sounds like you're fairly young but as a mum myself (I have a daughter in her early 20's), and someone who has struggled from my teenage years, I hope I can give you some advice and put some context around what you have written.

You are correct in saying that there could be a family link with endometriosis, but there are other gynae reasons for you to be struggling. Sometimes it's a case of your body adjusting to the changes in hormones, and things settle over time.

I started my periods when I was 12. By 13, I was always the kid who was passing out at school, and throwing up for the first two days of my period. I always seemed to suffer more than my friends. By the age of 19, I was fobbed off with a UTI for months, and ended up needing emergency surgery for an ovarian cyst.

My daughter started to suffer immense pain when she was 15, and was diagnosed with a large ovarian cyst. Thankfully, this burst by itself, but this is when we were told that there is a genetic link with endometriosis.

You are correct in saying paracetamol and Ibuprofen don't do anything to stop the pain. This is always the first level of pain relief that is suggested. The next level is something called Mefenamic acid, which provided some good pain relief for me (back in the day), my daughter and my sister.

The reason why your doctor has suggested the progesterone only pill is the fact that endometriosis feeds off oestrogen. If your current pill is not working for you, please go back to him/her and ask if they can change it to a different one (they usually try the cheapest one first).

Do not go down any exploratory surgical route if you can help it - any surgery causes adhesions and they cause major issues regardless if you have endometriosis or not.

I totally understand how you're feeling and please reach out if you need support.

Take care xx

[Hannah_w1990]

My Dr had the opinion that whether I do or don't have endo the treatment is usually the same which is to put you on a pill that reduces your periods or stops them. Go back and tell them you still want a diagnosis for peace of mind. They should refer you for some tests. It Could be something else... Fibroid, pelvic inflammatory condition, adenomyosis and endometriosis all have similar symptoms.

[_EndoWarrior_]

Hi Emma,

I too had terrible periods as a teenager and was finally diagnosed (after many trips to doctors) many, many years later through a laparoscopy. I asked to be referred to a private gynaecologist to speed things up as I was suffering. He performed diagnostic laparoscopy but also carried out ‘ablation’ which has a few other names. He was a general gynaecologist not one that specialised in Endometriosis hence why he performed ‘ablation’. This is a ‘red flag’ that I know now after reading and researching the units on Facebook’s[This post has been edited in line with Endometriosis UK's code of conduct]

To clarify this group is NOT a discussion or support group it is an information library to help you make the right choices on your treatment pathway. It does empower you and make you confident in asking (sometimes telling!) your GP what route you want to go down.

Education is key... read, read and read!

Join Endometriosis Uk, look up NICE guidelines on Endometriosis and you may need to look up BSGE Endometriosis Centres (Google it!) near you if you discover you indeed have Endometriosis. As someone else mentioned there are other gynaecological conditions which you may be suffering from instead or you may have multiple things.

I had Endometriosis, Adenomyosis and Uterine Fibroids.

I was put on the combined pill straight after my laparoscopy and that did help in reducing the pain and the bleeding was lighter and less frequent (not the case for all) but this basically masks the continued growth of Endometriosis. I also learnt that Endometriosis produces its own oestrogen so the only viable treatment is ‘Excision’ by a Specialist Endometriosis Surgeon trained in minimally invasive surgery (a BSGE Endometriosis specialist [This post has been edited in line with Endometriosis UK's code of conduct])

I know this is a lot of information to take in and suffering from Endometriosis is emotionally draining as well as physically.

Hope this helps. 🙂

[Lindle]

There is a very clear diagnostic pathway. The NICE guideline says:

'1.3.1 Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:

chronic pelvic pain

period-related pain (dysmenorrhoea) affecting daily activities and quality of life

deep pain during or after sexual intercourse

period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements

period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine

infertility in association with 1 or more of the above.'

Please be aware that masking symptoms with hormone medication is well reported as risking the progression to severe endo further down the line which would then require a far more complex surgery than having a diagnostic lap early to find out what you are dealing with.

I run a dedicated evidence-based UK guidance and support group with many detailed files on symptoms and treatment pathways. If you would like to join pm me. x

[Clarice123]

I went through this with my daughter, in fact we saw two gynaecologists . One said at 14 she was too young to have it. Then several years later saw another one, who diagnosed IBS!!

In the end I tracked down the most amazing gynaecologist who is BSGE accredited (endometriosis specialist ). He is based in Sheffield, there are others around the Uk.

I initially paid privately for my daughter to see him, £200 well spent . Thankfully he also does NHS , he then transferred her onto this list but did the procedures at the private hospital where we first saw him under choose and book, think it’s now called ebook. Basically you choose which hospital and surgeon you go to. The G.Ps know about it.

If you go onto the BSGE site it will tell you where the specialists are located in the UK.

All I can recommend is perhaps seeing a different GP or change surgeries, we had to do this In the end, I lost faith in our old one’s. Our old GPs didn’t want referrals coming out of their budget, they cancelled one that a locum had made and sent her a letter stating it could be dealt with in house!!!

If you can get to Sheffield her specialist is Mr Baxter. He is also based at the Sheffield Hallamshire Teaching Hospital. He is doing everything he can to help her, he is lovely, and very sympathetic.

I also agree with angiec, I’m amazed at your Mum. I have battled and been to countless appointments and A&E visits with my daughter as I know how it hurts. I’m so sorry you’re not getting her support. As I too have had this vile affliction.

I hope this information helps, I wish you luck sweetie.

[Bethleah]

Hi

It may help to see a different doctor at your surgery who is mire proactive or interested In Women’s issues. I printed off the nice guidelines on Endo and gave it to my gp. However you have to know the gp and if they would be ok with this. I can’t take hormones but I fi d physical therapy helps but it takes a long time. If you get a referral to a bgse centre they may have a pain clinic attached to them like mine has ( oxford).

If there is someone you trust take them with you to the appointment as they may pick up on things gp said that you missed . I’ve heard cbd oil can help with the pain. The pelvic pain clinic suggested it but said they can’t recommend it.

I’ve have unusual symptoms and with lindle’s info I finally got it confirmed that all my symptoms are due to Endo. It took over 20 years to get a diagnosis and several years before symptoms confirmed as Endo instead of being all in my head. It doesn’t take as long now thankfully but a gynaecologist can help so ask for a referral.

Hope this helps x

[Lhanda]

[This post has been edited in line with Endometriosis UK's code of conduct]. There's also lots of support groups on FB for endo that can arm you with information to advocate for yourself!! First point of call, see an excision specialist not a general gyn.

[StefaniaJW]

No one is helping nor listening to you because physicians are NOT trained to recognize nor treat endometriosis properly. Only skilled and experienced endometriosis excision surgeons, who have undergone specialised training, are able to.

Endometriosis is a complex, multiorgan, immune-related disorder that is very difficult to treat.

My advice would be to seek one of these highly skilled and experienced EXCISION surgeons and get surgery done right the first time. You need to find one and ask your GP to refer you to him/her.

In the meantime, change the pill if you still have severe side effects after a few months of taking it, adopt a better lifestyle and follow an anti-inflammatory diet (a whole 30, keto and plant-based diet will do).

[Lovebunnies123]

Hi, I know this post was three years ago but I am going through the same thing too, I hope that you have got the help you need either your diagnosis or a cute for whatever is causing you such pain xx I am so sorry you are going through this