Don't understand why my doctor won't diagnose me with endometriosis

[rhiannon_96]

I started my period at an early age of 8 years old. I suffer with irregular periods which are painful and lose quite a lot of blood clots. Also bleed in-between periods. Got put on the pill at 12 years old to try regular my periods, slow the bleeding and help with pain. Try several pills throughout my early teens. Then went on the implant at 16 years old.

Endometriosis runs in the family, my gran stuffered with it and my older sister does who has unfortunately had to go through early menopause at 28. I've been to the doctors numberous of times concerning my periods, pain all the time, bloating and painful sex.

The doctor has advised me to have a Mirena coil fitted and said he wouldn't advise me to have a laparoscopy as it could cause more endometriosis and more complications but does seem very likely I do have endometriosis. I'm scared as I'm only 22 incase I may not be able to have a family and what if it spreads to other organs in my body. Why won't they take me serous? It's affecting my day to day activities and my relationship due to painful sex. Just wish it was all normal.

Sorry for the paragraph, hope you all can advise me. Thank you for reading

Rhiannon

[Pinkprincess22]

Are you seeing the same dr every time you go? If you are I’d recommend requesting to see a different dr for a different opinion.

I went on the coil 2 years ago due to extremely heavy periods and to be fair it did stop all the pain but I’ve got a very large fibroid that’s got worse and it’s pushed the coil almost out so I’m back on a pill again until my operation

I’m surprised they haven’t suggested referring you to a specialist to have a scan as there could be more going on inside.

I’d def see if you can get a second opinion, tell them that your quality of life isn’t good because of the pain etc. It took me three referrals until someone took me seriously... shouldn’t have to be that way though

[rhiannon_96 in reply to Pinkprincess22]

Thank you for getting in touch, I have seen 3 different doctors. I seen the third one today and he said it seems more likely I have endometriosis

[Pinkprincess22 in reply to rhiannon_96]

So has he suggested he’s going to refer you to a specialist?

As I mentioned I’ve seen three and I assumed they would all be the same but it’s only the third one who’s taken me seriously where the other two felt I wasn’t ‘that bad’

I hope you got more success today and that it’s a step in the right direction... it’s not the drs fault they can’t know everything but they should be listening to your issues and referring you to someone who can help and is an expert.

[rhiannon_96 in reply to Pinkprincess22]

I am waiting for a doctor in the area who specialises in endometriosis to ring me so fingers crossed

[Pinkprincess22 in reply to rhiannon_96]

I’ll keep my fingers crossed for you that this specialist calls you... if you don’t hear anything after a set amount of time get back to chasing again!

I saw that you are considering private if unsuccessful, it’s the route I’m going down now which has so far been more successful.

Re the bloated feeling I have been trying charcoal tablets from Holland and Barrett and they have helped me somewhat... maybe worth trying?!? X

[rhiannon_96 in reply to Pinkprincess22]

I've got an appointment with a gynaecologist in November now.

I am glad it has been successful for you. Do they help with bloating

[Pinkprincess22 in reply to rhiannon_96]

Good news re your appointment!!! That’s a step in the right direction! Shame it’s so long away but at least you are further than you’ve been before!

Yes I do find that they help me with the bloated feeling... I remember before o was put on the coil that i suffered with bloating... never suffered whilst I had the coil but 2 weeks without it now and the bloating is so painful

It might be worth a try, I hope they help... I’ve got to get more at the weekend and at the moment they have buy one get another for 1p sale so going to stock up!

[rhiannon_96 in reply to Pinkprincess22]

They said if they have a cancellation they will let me know. I can't believe it has taken this long my mom always went with me to my appointments as she was the first to be concerned about my periods the moment I started I didn't see the problem as I never known anything different and thought it was normal but I was younger at the same and the older I'm getting the more I'm realising something isn't right.

I will definitely get some tomorrow worth a shot. I don't know what I would do without you ladies helping me and advising me. Did you get in okay with coil? Love a good bargain haha

[Pinkprincess22 in reply to rhiannon_96]

Fingers are crossed that they get a cancellation and move you up the list!!

I think the trouble is drs can’t be experts in everything and some just don’t take us seriously.

I was only taken seriously after 14 days of very heavy bleeding they wouldn’t see me before hand as they thought I would be ok... but stepped into see the dr she took one look at my face and told me she thought I was anaemic, she actually called an ambulance to come get me to take me hospital.

Re the coil it stopped the pain and bloatedness that I’m now experiencing now I no longer have the coil. The bleeding started off less but over time it’s got heavy again although not to 14 straight days! I have to take transamic acid to try to control the bleeding.

Because for me the drs said I’m not so bad as I was when it was 14 days which is why they wouldn’t do anything for me but because I’ve kept fighting for another opinion someone has finally listened and acknowledged that this is not normal and it’s controlling my life.

[rhiannon_96 in reply to Pinkprincess22]

I'm hoping someone cancels haha but if not least I'm getting seen. Trouble is most doctors don't even know what endometriosis is and that is does have a lot of symptoms which can be confusing for something else.

Bloody hell is a joke sometimes I think they should take you serious as you know your body more than anyone else. The amount of tests they have done which all came back clear I'm thinking how much has this cost the NHS when they could of done a laparoscopy in the first place. I'm on transamic acid have been for several months which has calmed the bleeding slightly.

I'm glad they took you serious as it is a horrible disease and can affect a lot of things. Which is scarry when you want a family and some sort of normality.

[KGDI]

Hello Rhiannon_a22

I am sorry to hear you are struggling. Like you I started my periods very early (9yrs going on 10) and I wasn’t diagnosed until I was 20 despite the heavy bleeding episodes I had. I was offered various contraceptive pills and depos etc but I had a bad reaction to each of these options including migraines for days at a time. I was finally diagnosed after I forced my GP following a discussion with a Gynae at uni confirming my symptoms adding up to Endometriosis. I’m now 35 and have had multiple surgeries including 4 excision and 1 to remove cysts, Fallopian tubes, a second uterus and a rudimentary horn that had been collecting blood since puberty which was attached to my uterus but wasn’t associated with the cervix. I wasn’t able to have the coil because of the congenital anomaly with my uterus but if things were different I would take this option. The other other alternative is to have the depo injection which does the same thing as the coil. Perhaps you could discuss this option with your doctor.

Just remember what this will do is mask the pain etc for a while but towards your late 20s you will require laproscopy to confirm the endometriosis diagnosis. Your doctor may feel it’s too early for you to have the surgical option although they could do a trans vaginal ultrasound. Not everyone endometriosis can be seen with ultrasound but in my case, it was clearly seen.

In terms of pain during sex is a common issue with endometriosis. Sadly the symptoms are manageable long term but it’s a frustrating condition to live with. But if you exercise regularly and have a gluten/diary and red meat free diet, the build up of endometriosis tissue will be managed more appropriately. I’ve done this for more than 2 decades and it’s really helped me.

I hope things get more manageable for you. Stay strong x

[rhiannon_96 in reply to KGDI]

Thank you so much hunnie, I just feel so alone at the moment and low with the bloating/pain. You have gave me some hope, hopefully get the bottom of it and live my life to the fullest I can. If I don't get any further I am looking into going private to make the process quicker to finding out and hopefully take me more seriously. I have never heard of the depo injection I will definitely look into both options and discuss it with another GP I feel like I working myself through the whole list of GPs at my GP practice haha. I have had a ultrasound came back clear and also had an endoscopy as the doctor thought it was something else.

I am thankful my partner is every understanding about the sex side of things and doesn't ask for it. I walk my dogs twice a day, pretty much walk everywhere and do zumba. How come to cut gluten and dairy? I'm a vegetarian so don't have that trouble with red meat. I will take everything on board what you have all said I feel like I'm not alone even though I do have my sister. Thank you again x

[KGDI in reply to rhiannon_96]

Sadly bloating is a difficult problem to get rid of but mint tea is somewhat helpful and I’ve used it for some time now. I too went private after the initial delay and the last 4 surgeries I’ve had been completed privately. I would also encourage you to discuss all your options with a gynaecologist that is an Endometriosis specialist, that will make a world of a difference.

Well that’s good to know, the next thing would then definitely be to meet with a good endo specialist since your ultrasound appears to be clear.

So in terms of gluten, you can buy gluten free bread, pasta, spaghetti etc. There’s usually a free from aisle at all supermarkets. To cut out diary, you’ll have to drink soy or almond milk, there’s diary free ice cream yogurt etc as well you can buy. These will naturally control your hormones because endometriosis tends to grow with increased oestrogen.

I also run 3-4 times a week (depending on my work schedule and pain episodes) as that’s really helped me with my low moods. Walking the dog is great, it’s good to be around nature and it will really help you!

I can understand how you feel about feeling low and alone! I felt the same way when I was younger despite the support I had from family and friends. I’ve been married for 7 years and my husband is great and supports me every step of the way, so I’m glad your partner is also very supportive.

I would push to get a definitive diagnosis before you decide to have kids at some stage because endometriosis could cause problems. I have had multiple miscarriages and now have to go through IVF. To add my endometriosis, my surgeons also found I have adenomyosis and congenital issues within my uterus. I wish I had found out about all this earlier so now I always tell everyone please discuss everything with your Gynae and if something doesn’t make sense get a second opinion because it is so important to know all this during your 20s. I hope you feel better soon!

I’m glad I could be of help x

[rhiannon_96 in reply to KGDI]

I am definitely up to trying anything had enough of looking pregnant but settles down when I'm on my period. Hopefully I will find one close to me as my services in my area are very limited due to living in a town.

I never thought gluten or dairy would affect it but I will definitely look into the other alternatives. Thank you for your advice, time and support. I'm glad to hear your husband is supportive for you.

I'm really sorry to hear you had trouble conceiving and sorry for your losses. Fingers crossed the IVF is successful for you and I will keep my fingers crossed 🤞 for you. Thank you x

[GrittyReads]

A laparoscopy is the only way that Endo can be formally and properly diagnosed.

I would insist on a laparoscopy, but on the strict and absolute understanding that they do not remove any of the endometrial tissues. This should be a 'diagnostic' laparoscopy, ONLY! That must be absolutely clear.

Removal of endo tissue during a diagnostic lap, can cause more problems, and if it is found that you have any of the more severe forms of endo - often in difficult to remove areas - then they absolutely MUST, 'only' be removed by BGSE specialists at a BSGE clinic. These surgeons are specialised in finding and identifying all the different types of endo tissue - and in all the 'difficult to access places' that general gynaes often miss .. and they have bowel surgeons - etc - on hand if there is endo on the bowel, or in other difficult to operate on areas.

You can only be seen by BSGE gynaes, once a general diagnostic lap has identified that you need to see such a specialist.

Your GP has an exact protocol on the Diagnosis of Endo - and on the referral of women to these specialist clinics - that he is supposed to follow. It seems yours is ignoring this and trying to push you onto a mirena coil. These can help, but only once it is clear that there are not other problems.

I woulD check out all this info with 'Endometriosis UK' who 'host' this site on 'Health Unlocked, and then go back to your GP's surgery, see a different Dr and present him with the facts and ask for a purely diagnostic lap - you have to sign a form in the hospital and they should not remove endo if you have said it should be strictly diagnostic.

Hope this helps!

Gritty