looking for advice on potential endometriosis

[Citrusheights79]

Hi

Can anyone give me any advice on this please, as I’m desperate now. Sorry for the long post.

I started with period issues since they started at 14. I’m 43 now. They are very heavy and I pass 50p size clots. They flood and goes on to clothes. I get headaches, nose bleeds and feel faint. I get hot flushes, raging moods and intense hunger. My hair falls out and I get bad IBS. I get pain that is 9 out of 10, just in my left ovary. It’s like the pain from a moth ulcer but worse and feels almost itchy. My stomach swells and I look 6 months pregnant. Sometimes the pain is in my back and I can’t stand up straight. I get pain during sex and when going to the toilet.

When I was younger I had time off sick from work and couldn’t go out during my period.

I’ve had a loop biopsy to get rid of pre-cancerous cells and my last smear was normal. I’ve had an ultra sound scan on my kidneys, liver, womb, uterus and ovaries 3 times. During my period I can feel a swelling in my left ovary, like a tiny lump. I’ve had all normal blood tests and my pulse is normal. They’ve said there’s nothing wrong and they can’t do anything.

I’m taking Tranzamic acid and they are lighter but still not as light as the average. Last month the pain was unbearable. The doctor told me to reduce my alcohol but I don’t drink and lose weight. I’m over overweight but have only been this way since aged 32. I once went to the gym regular for 2.5 years and my periods were even worse. I’ve been told just to carry on taking tranzamic acid.

I asked about endometriosis but the doctor said it can’t be that because the pain isn’t daily, my periods are regular and I don’t bleed in between. I asked about peri menopause but they said I was too young. I’ve started a boot camp and lost weight since lockdown. Its not changed my symptoms. I do need to lose more weight and exercise more. I’ve had therapy, manage stress, work less hours, meditate, do art, eat well and take vitamins. It doesn’t alter my symptoms. They just tell me to lose weight and try to give me antidepressants. I had the pill once you take all the time but my hair fell out. I had the coil but I got an infection. I don’t know what else I can do. I’m at my wits end. I couldn’t fit in my pyjamas last month my stomach swelled that much and I felt so angry for no reason. Does anyone have any advice? It really impacts my life. The mood changes seem to be constant now. I feel angry/low. I feel gaslighted by the medical profession. Like they think I’m this way because of my weight but I was 8 stone for years and my symptoms were worse.

Thanks Helen.

[BloomingMarvellous]

Frankly, they are talking nonsense here and am boiling with indignation on your behalf. Bloody gaslighting- again.

Firstly, you can be either menopausal or perimenopausal. Do go to Dr Louise Newson’s website and the Balance App which has loads of fantastic information for you to explore and share with your care provider. Many GPs in practice have never done what was voluntary extra of women’s health training and those that have it’s pretty lightweight on menopause. Ask at your practice if they have someone who specialises in women’s health or menopause or if there is no one ask for a referral to a menopause centre near you. ( you don’t say where you live but if it’s the West Country bad luck for us there isn’t one !) . If you can afford it go to The Newson Clinic itself. There are now several.

Secondly , you can get endo pain anytime with or without your cycle but so also adenomyosis which sounds like maybe a consideration for you. Related to endo it gets worse around menopause and can result in horrible clots and heavy bleeding as well as a lot of discomfort. Sometimes detectable with a specialist MRI . A general gynaecologist is no good to you here, so go back to your GP and request ( politely through gritted teeth ) an urgent referral to the endometriosis specialist in your area to discuss both.

Hope it goes well and whatever you do keep going til you get what’s needed.

[GreenViolin in reply to BloomingMarvellous]

Wow, Helen. I really feel for you. This is my first post on here, but your story really struck a chord. I’m the same age as you and have had issues with my periods from the day they started age 11 including large clots, heavy bleeding through clothes, intense stabbing pain, periods lasting over a month, bloating, painful sex etc. I was finally diagnosed with endometriosis age 24, which seemed like a long time to wait, but it seems your wait has been even longer to get a diagnosis that makes sense. I tried the pill, various hormone treatments, had two laparoscopies with laser surgery, the first barely changed anything. My second surgery was different, mainly because I had a Mirena coil fitted during surgery, and this stopped my periods, which was such a huge relief. The bloating and pain continued but was manageable for a while without having to deal with all of the bleeding.

I’m now back waiting for my third surgery, as the pain is more intense than ever and continuous now. This time I’m seeing an endo specialist rather than a general gynaecologist and he is going to excise (cut out rather than laser) my endo, adenymyosis and fibroids. We did explore hormone therapy again, but one option required me to have my Mirena removed which is too great a risk for me given my periods could return, and the other would impact my bone density which is not a great idea as I have osteopenia. I’ve declined a full hysterectomy though… I just want as much as possible of the problem removed without taking organs out.

Like you, I have IBS, so it can be hard to tell what is IBS pain and what is endo at times. As my pain got worse and worse, I was also getting a lot of brain fog and night sweats, and having read Davina McCall’s book, booked an appointment with my GP as I was convinced it was peri-menopause. When you’re under 45, they send you for blood tests, so I had these and it turned out I was vitamin D deficient. Since I’ve been on vitamin D tablets, the brain fog and night sweats have disappeared.

I would keep trying different GPs until you find you are listened to. You can ask for the blood tests to see if there’s a chance you could be perimenopausal. As far as endo goes, the pain definitely does not have to be continuous, and neither do you have to bleed in between periods. The best book I have read so far is The Doctor Will See You Now by Tamer Seckin. He’s an endo specialist in New York and shows so much empathy and understanding of what women go through with this disease, so I can highly recommend.

Good luck with it all.

[Citrusheights79 in reply to BloomingMarvellous]

Thank you so much. This is so validating. I am based in Leeds. I didn’t know any of this and have never been told. I had the hormone test and they said it was normal but I know it’s not normal for me to be shouting/angry a lot. I wasn’t like this 2 years ago. I also cry at random things I never use to cry at. I’ve just looked at the app and the clinic. It looks amazing. I think I will go back to the doctor. Thanks again. I’m sorry to hear you’ve both been through such awful pain/symptoms. I will check out that book too. Xxx

[BloomingMarvellous in reply to Citrusheights79]

Do look at the Newson website. There’s a lot on the mental health aspects of perimenopause - you sound a lot like me and it deteriorated rapidly and became badly troubled by suicidal intrusive thoughts. No amount of therapy or antidepressants did a thing. A fortnight of the right low dose bio identical hrt and it lifted and I started to sleep properly. Looking back it made sense as there were no specific triggers or reasons for the feelings which were overwhelming. NICE guidance is now for peri and menopausal women who are in mental distress to be first prescribed HRT rather than antidepressants. Your GP needs to be made aware.

[Citrusheights79 in reply to BloomingMarvellous]

Thanks so much. What a joke that women have to fight to get basic medical care.

[Citrusheights79 in reply to BloomingMarvellous]

I just want to thank everyone for the amazing advice. I came on Friday and the pain has been unreal. I’ve had to call in sick today. Because I don’t get listened to properly I’ve emailed the doctors this morning. I’ve listed my symptoms, asked them to pass it on to a female doctor who specialises in woman’s health and asked to be referred to a specialist gynaecologist. If this doesn’t work I will complain to PALS and if that doesn’t work I will ask to be referred privately. I’m so exhausted but I’m determined to fight this. Thanks again everyone. This forum is amazing. I’ve learnt so much from reading all the posts.

[Palomino13]

Hello!

Goodness this doctor is horrific and clearly gas lighting you. GPS don’t have the knowledge and experience to diagnose Endometriosis. Don't waste your time, change the doctor and ask to be referred to a specialist BGSE Endometriosis specialist.

The only way to diagnose is with an Endometriosis specialist, or by having diagnostic tests with an Endometriosis sonograper, MRI scan and ultimately a Laproscopy.

I wasted a lot of energy on the wrong people and it affected my mental health a great deal. The best solution is to pay for an initial consultation, see a Private Endometriosis surgen (perhaps one who also works for the NHS in your area) and then take the letter back to a new doctor in your surgery. I did this and with in 5 mins he examined me and til me he could feel my organs were stuck together.

I waited for 7 years on the NHS and had was pretty much fobbed off that it was only routine and “just a cyst”. I had no examination in 7 years, just a scan done with a general sonographer (the scans are operator dependent).

I had severe Deep Infiltrating Endometriosis all over my organs, lesions on my bowl, bladder. The exhausting part was not the operation it was dealing with battle before and begging people to listen. I had to pay privately in the end as I couldn’t wait.

You need to take control back. Good luck to you. I hope you feel better soon 😊⭐️

[Citrusheights79 in reply to Palomino13]

I’m so sorry you’ve been through all that. It’s horrific. Thank you I will look in to what you’ve said.

[BlueWhiteSand]

I’m so sorry you’re dealing with this rubbish. Many of my symptoms sound similar to yours and I have now been diagnosed with endo and adenomyosis and am negotiating my way towards a hysterectomy. I can’t add much beyond what others have said about your endo symptoms but maybe can add a bit about the others. I have IBS symptoms now that I never had before, although it’s worse than IBS as sometimes I get whole-body itchiness and gritty eyes too. My hair falls out all the time. I also get insane sudden hunger, shakiness, and irrational anger despite my blood sugar being fine in blood tests.

But I have seen some improvements in my symptoms from reducing my carb intake (I tend to eat carbs and fruit only one meal per day) , upping my intake of good-quality fats (butter, avocado, olives, good-quality meat and fish, Etc), cutting out all non-butter dairy and eating very few nuts. Obviously everyone is different, but this has stabilised my mood and I get less hunger. I also have somewhat less bloating. I still often feel rubbish physically but life feels better mentally.

Hope this helps a bit as a suggestion but obviously you have to find what works for your body. It’s so frustrating how little is known about the other stuff that comes with endo. I was basically bombproof until a few years ago and then endo and IBS/immune-type symptoms just came out of nowhere together and wrecked my body. The gynaes obviously can’t help with the non-gynae symptoms but the best I’ve got from a rheumatologist about the other symptoms is that they are “medically unexplained”.

Good luck, keep pushing to be heard - you know your own body!

[Citrusheights79]

thanks so much. That sounds awful and also not nice being told some of your symptoms can’t be explained. I will look in to what you said about the food. Thanks,