I'm so pissing angry

[RiddledWithAnger]

Suspected endometriosis. Sympathetic doctor. Waited a year for my appointment at the hospital. Had it today.

Apparently they don't routinely like to try to diagnose it or "give it a label" as period pain is so common.

Given options of tablets or mirena coil. That's it. Because there is no reason to do a diagnosis. Fuck me, my doctor could have told me that?! I waited a pissing year for that?!

I don't care how unreasonable I might sound but is it so terrible that I want a fucking diagnosis? Or, ya know, someone not to just put down my horrific pain as normal? I just want to rip my womb out. If men suffered from this I'm sure more money would go into it.

On a side note, exactly how painful is the coil to put in?

Thank you coffee, ah so the Ponstan is the "M" drug! He mentioned naproxen. Hopefully my doctor will know enough to help.

Glad it helped 😊

6 years of nattering the Doctors for me before any of them took notice. Eventually I was referred to a gastro consultant who scanned me and saw the damage, referred me to a bowel surgeon even though I kept telling them the pain and bleeding and swelling was only when I was due/had my period. I had a hysterectomy at the age of 30. I have been fine since but I hoped no woman would have to suffer like I did, it's been almost 30 years since I was diagnosed and still Doctors aren't listening to us women - apparently it is fairly common so why are we still finding women being told "periods hurt" now without any investigations?

I am absolutely HORRIFIED that this medical condition has been minimized in such a manner by a medical professional. You poor, poor thing. I would suggest writing an official complaint to EVERYONE!!! Please ensure that you include a working knowledge of all the possible complications of untreated Endo, including the psychosocial ones. That doctor deserves a very good professional talking to. I think they’re in the wrong business.

I didn't realise bowel issues were related. I've been telling my doctor and consultant that the days before, during and after my period plus when I ovulate I have sudden onsets of very loose poo with the most horrific cramping pain before, several times a day. They said it's a separate issue and I said it seems related because I've been tracking dates and it seems anytime there's inflammation around my cycle the bowel issues are present.

Endometriosis deposits can get onto the intestines as well thus causing pain.

You really do need to have a series of discussions with a consultant gynae about your treatment options going forward. If endometriosis is present and a hyst is performed, the ovaries would need to be removed at the same time.

Mefanemic acid or transexamic acid tablets are often prescribed to women who present with endometriosis. It is not always successful for some women; its treating the symptoms rather than tackling the root.

I would further push your GP for a referral to one of the BGSE centres for endometriosis as endometriosis also requires careful management.

This is what I've been given

Have a look at some endo support groups on FB too OP, lots of good info there about how/where to get treatment. It makes me beyond angry that we're treated like this and we're far from alone www.dailymail.co.uk/health/article-8630667/Are-women-agony-endometriosis-MALE-doctors-refuse-believe-it.html

@SquirtleSquad - Yes, absolutely, bowel adhesions are a complication associated with endometriosis. I have even heard of lung adhesions being mistaken for asthma or pneumonia - even COPD or pleurisy. When the lining of the endometrium or uterus gets out and into the abdominal cavity, it can build up and stick to kidneys and other organs as well, causing fibrous, “scar-like” tissue build-up that the body can’t help but react against. It impedes the natural movement of muscles (like peristalsis which moves food through the intestines and bowels, etc) and sticks things together which should be separate. These end up causing pain as you move about. Endometriosis can be a debilitating illness and this is why I am absolutely gobsmacked at the response of the so-called professional who didn’t want to label it. 🤦🏼‍♀️🤯🤬😳

@RiddledWithAnger

I told him on the phone that I absolutely would not take the pill due to the effect on my mental health. He told me the mirena coil was progesterone only so would much better but I am still very wary.

I've just fired off an email to PALs.

I tried the mirena twice (contraception not endo) and it sent me psycho, just like the pill. B bc e aware...

I'm so sad that things haven't changed.

30 years ago I was told by a doctor to go away and smile more often when I plucked up the courage to go and talk to someone about the pain I was having.

Because of this conversation, I haven't trusted myself to know when I'm ill for years. I thought I must have been malingering if the doctor said I should just cheer up and stop complaining. I get anxious going to a GP in case they say there's nothing wrong with me so I don't go if I can possibly help it.

I learned to manage my endometriosis through diet and exercise as much as I could. Other than that I just got on with it, I could tell you exactly when and where different things were happening in my body because of the pain of the scar tissue being ripped but I couldn't see another doctor because I thought they'd just laugh at me.

I had a laparoscopy about five years ago because I needed something else doing at the same time. They told me where the scarring was that they'd lasered and it was exactly where I had been telling people for years. The pain has been so much better since it was lasered.

I hate the fact that people with this condition are still being written off. I'm so sorry it happened to you OP.

I don't want to be negative but I do want to share that I had a Mirena coil for a year. It was awful, my personality changed, I went off sex, I put on weight, it was painful. I know some people love it but for me, it was hideous.

I just spoke with the nurse. I briefly explained what had happened and she didn't really want to go into it. Fair enough I guess, she is on a time limit.

She supported the hospital really. She said that the drugs we could try might be very effective and that a lot of the problems I will have are because I said I may want a baby. So if I didn't want a baby they could do the coil (apparently she would recommend this every time and it's the gold star of treatments and lots of a women ask why they didn't get it before!). They can give me anti sickness drugs if needed or try some beefier treatments...everything apart from diagnose me apparently.

You know what? I don't even want a baby! I gave up on that years ago! I just said that to give myself some protection over the hormonal stuff they want to force on me!!!

I mean... is it really cheaper to put me on 3 different tablets?! I'm only 35, that's YEARS of drugs?! And all the while it's attacking my body still?

I'm so sad and depressed now. Tomorrow I will look into private options.

Everysinglebloodytime did you find diet helped? I lost 2 stone and it made no difference but what does seem to make a difference is the amount of junk I eat the week of my period. The more junk the more the symptoms are horrific!

@RiddledWithAnger

Everysinglebloodytime did you find diet helped? I lost 2 stone and it made no difference but what does seem to make a difference is the amount of junk I eat the week of my period. The more junk the more the symptoms are horrific!

I stopped eating meat and eat lots of vegetables. It keeps me regular which means there is less obstruction down there and things move about more so less 'sticky'. None of this is evidence based, and it's not something that I read somewhere it's just what worked for me and my theory as to why it worked. I do yoga and walk or run when I'm well enough so nothing too demanding but I do notice the difference when I don't do it.

I started eating meat for a year and felt awful with it so went veggie again. Maybe placebo 🤷‍♀️ who knows?

That is interesting and I would agree with you! It affects my bowel so I do believe you are absolutely right and the junk food makes bowel movements harder even without endo!

I have also cut red meat from my diet because of this. Lockdown did my weight no favours so I'm back to slimming world now!

Just posting this in case it helps. I don't have endometriosis (as far as I know!) but did have really heavy and painful periods. Which also affect my bowel (which took me a while to put 2 and 2 together!). I also don' have any children.

I had Mirena fitted, mostly for contraception, but the great side effect is pretty much no period (maybe a day where there's a bit of spotting, more recently as I've got older maybe 2-3 days, but nothing heavier than a pantyliner which could last all day from a flow perspective) - and I used to be on the thick tampons with a bit of leaking. The pain is gone - no more horrible cramps. No more bowel affects (as far as I can tell!)

My periods settled almost immediately - I've never been regular but from day one of the Mirena I think maybe a month or two then no more periods. I'm on my third one now.

From a fitting pain perspective, having had no children my understanding is it's a bit more uncomfortable. My personal experience is it has varied with each of the 3 I've had so far - each fitted by a different doctor. The first didn't hurt, the middle one was quite painful, and third one somewhere between the two. Think of a slightly prolonged smear discomfort and maybe a bit more. But it's only for a really short time. Then a bit of general cramps and complaining for the rest of the day - whenever I have them fitted I take ibuprofen before I go, then book the day to just go to bed with a book and that's been fine. No bed and book would also be manageable, I just treat it like a weird sort of a me day !!!!!!

Thank you dgirluk, that is good to know. I think my history with any contraceptive that is hormonal is so horrific that I can't bare the idea of even trying it? I read it doesn't always stop periods and can take months for things to settle and I'm just not up for even trying right now

RiddledWithAnger

re your comment:-
"She supported the hospital really. She said that the drugs we could try might be very effective and that a lot of the problems I will have are because I said I may want a baby".

Unbelievable but she's closed ranks here. What drugs too would be effective?. Also drug treatment like Zoladex has its very own side effects too. I was also offered the coil by the GP and turned it down flat because as far as I am aware its still not fully licenced as a treatment for endo. Told him that as well, he did not respond.

Any response from PALS?.

I found that diet made no impact on my endometriosis whatsoever (I was younger and thinner then too when all this started:). What did make a difference to me was seeing a gynae consultant who actually listened, told me what he thought was wrong and then suggesting laparoscopic surgery. Another shitty thing about endometriosis amongst many is that "mild" versions of this can and does cause great pain, it is when and if it becomes more chronic that pain can lessen.

I would also look at going private and seeing a gynaecologist that way. That's what I did at the start of this year due to further gynae issues pertaining to uncontrollable and prolonged bleeding and am very glad that I did.

Any symptoms that are cyclical in nature and or get worse up to and including menses should be checked out properly to see if endometriosis is the cause.

For anyone interested these were my symptoms from around age 14 in no particular order:-

Pain - cyclical and pain too that was unpredictable and seeming to have no defined start. Pain that did not completely cease from using painkillers (those did not touch the sides of it)
Heavy bleeding, sometimes with clots
Dark brown stringey bits (this is "old" blood)
Cyclical pelvic pain in hips
Stomach aches
Rectal pain (also known on here as javelin arse)
Sharp pain down front and back of legs (due to endo aggravating the sciatic nerve)

(I did not suffer this monthly only because my periods were irregular and that was due to PCOS; again that was only diagnosed during fertility treatment).

I got fobbed off by my GP, asked for a choose & book appointment at my local private hospital, had surgery within a month. Had I waited for an NHS hospital I would have waited up to a year, from first appointment, two laparoscopies & a hysterectomy took 6 months in total.

I’ve also had a good experience with the Mirena, so good I’m on my third. Light spotting for a few months and then nothing, to the extent I don’t even have sanpro in the house now. And I’ve had PND, but no mental or physical health problems from the Mirena.

My GP surgery has one (female) GP who fits them and is expert at it - you definitely want someone who does them lots, as the one time someone less experienced did it I found it painful rather than uncomfortable.

Mefenamic acid?
Afraid I don't have good things to report about the mirena (fitted to treat heavy bleeding due due to fibroids) but I would try it if it's an option.

No response from PALs I'm afraid but I expect they will take at least a week.

Husband is furious and will phone them tomorrow. He knows how I'm feeling as he has a chronic illness and was fobbed off for a whole year. Only diagnosed when a flare up put him in hospital so he has his own axe to grind with our local hospital!

Right I have a question about going private. I don't live near any of the specialist endo places so that's out. I do have a private hospital about 30miles away so have looked on their website.

How does it work? I have requested a quote for a laparoscopy but I would never be able to afford it up front as I'm sure it will be thousands.

So how does health insurance from somewhere like BUPA etc work? Would they even cover this condition because it is already being investigated?

I saw a consultant ophthalmologist privately at a local private hospital. (for a different matter than yours obviously!)

I just phoned the hospital and asked for an appointment. I was given one the following day!

I was with the consultant for about 45 minutes. I had plenty of time to ask questions, he explained my disease properly to me with diagrams etc. I wasn't made to feel at all rushed, or silly for asking questions, or anything like that.

It cost me £200. I don't have private medical insurance so just paid it myself.

It was definitely the right thing to do for me. I stopped worrying and calmed down a lot about my disease. I would definitely recommend it.