Help!! Is it Endo?

[Liss_97]

Hello Ladies!!

Just wondering if I could have some advice please.

Since I started my Periods aged 11 I have experienced painful and heavy periods. I just thought I was an unlucky one and didn’t think much else of it. As I got older (I am now 21), things seem to get worse. I started to track my periods and realised that I was also experiencing intense pain from Ovulation lasting all the way through to period finishing (constant dull ache, sometimes days where I have a burning, hot and intense stabbing pain) felt in my lower abdomen/pelvic area and my lower back.

I was eventually put on the pill aged 16 and this seemed to help control the pain as my periods stopped. However, I still experience a dull ache even though I am not on my period and I do still experience shooting/stabbing pains in my abdomen and a shooting pain that feels like it’s going up my bottom.

Other symptoms I have are:

- Pain when having sex (burning pain and stabbing pain in Vagina)

-Pain on penetration (can’t use Tampons and had to have a smaller Speculum when being examined)

- Bleeding after sex (not extremely heavy, little bit comes out but is obvious on wiping)

- Reoccurring UTIs

- Occasional kidney infections

- Bloating as soon as ovulating all the way through to period finishing

- Weak bladder that doesn’t fully empty

- Bleeding from my bum when on my Period

There is no family history of Endometriosis.

I have been seen by the Gynaecologist at my local hospital who has given me an internal/external ultrasound, taken swabs and examined me. The Ultrasound didn’t show any abnormalities and the swabs came back clear. However on examination it was noted that my Cervix was very small and appeared to have an extra lip.

The Consultant I saw came to the conclusion that endometriosis was plausible and put me on an open referral for a diagnostic laparoscopy. He said it was completely my decision if I want the surgery or not.

Now I am stressing about what to do. I was just wondering if anyone has similar symptoms to myself and it was Endo? Or if not, what did it turn out to be. I just don’t want to waste NHS time and money or my time!

Thank you in advance!

[Christin_a]

Hello

This sounds like it could be endo. Clear scans don't mean it's not it's more to check for cysts and fibroids. The only way to get a confirmed diagnosis is to have a lap, but make sure the person doing it has a specialist interest in endo.

Bleeding from you bum can suggest that it's on your bowel so you may be able to be referred to a bsge centre they deal with things like endo on the bowels as it requires a bowel surgeon who knows about endo aswell as a gynecologist.

[Kelley8]

Sounds like endo, you experience similar symptoms to me. My pain in my bottom was so bad I would collapse on the floor and bleed from there. I had my 4th extensive op last April 2018 and touch wood so far so good. I would definitely recommend the surgery especially if the pain is interfering with your daily life. It’s not normal to feel that way all the time and you shouldn’t have to suffer. If the endo is not extensive they can usually remove it at the time they diagnose it, if not they will rebook you in for a second surgery to remove it. Any questions please just ask. I’m 32 and been suffering since I was 16 I’ve had 4 operations and a million of horrible crappy symptoms. Good luck to you x

[Liss_97]

Thank you both for taking time to reply!! I really appreciate it as nobody else I know can relate to the way I am feeling

I also forgot to mention that I have also recently been suffering with Sciatica and I am worried that this is related to my other symptoms.

I think I will now definitely consider a lap. I’m not too worried about the pain as it seems to have improved since taking the pill. My main concern is Fertility Problems and I don’t want to leave things to get too bad.

After my consultation with the Consultant, I had a follow up meeting with the Gynaecology Nurse Matron. She explained that because I am taking the pill and not bleeding anymore, if I have Endo, it shouldn’t get any worse. Do you have any experience with this? I am slightly concerned because I sometimes get break through bleeding/spotting and I’m worried this is making things worse!

Thank you again! xx

[Christin_a in reply to Liss_97]

That nurse is incorrect. The amount you bleed or do not bleed does not correspond with endo growth.

The pill just masks the symptoms in no way does it stop the endo getting worse. I was on the pill from the age of 16 (no gaps no stopping) for bad periods and at age 28 I had daily pelvic pain and was finally diagnosed with endo. If the pill stopped it getting worse that wouldn't have happened to me.

Please ensure your consultant has a specialist interest in endometriosis, it's a requirement in the NHS that if it's suspected only a gyne with a specialist interest should see you and do surgery.

If your main concern is fertility be sure to raise this with the gyne as they can check somethings out, that they only do/check if requested/fertility is the main concern rather than pain.

[Liss_97 in reply to Christin_a]

Oh wow!! That’s made me think about things in a completely different light! Thank you so much for your help again! I really appreciate it x

[tig0512]

Wow I’ve just read your post and can’t believe how similar our symptoms are, I’m also 21 and suffering daily because of suspected endo, but I’m still waiting on my appointment to come round.

I’d definitely consider surgery but I guess if you’re feeling on top of your symptoms, I wonder if it’s a viable option to just have the surgery in a few years if it was to get worse?

Good luck x

[Liss_97 in reply to tig0512]

Even though I would never wish this condition on anyone, I am glad I’m not the only one who feels this way! Hopefully your appointment comes around quickly, it’s so horrible waiting when you don’t know what’s wrong.

Please don’t be put off if the first Gynaecologist you see dismisses your symptoms. I ended up making an official complaint against mine as he said that ‘people who experience these issues have usually been abused’ and basically insinuated that my boyfriend was abusing me!!!! 😡 I was then seen again by a different consultant who straight away mentioned Endometriosis. So keep on fighting if you think things aren’t right!

As myself and my boyfriend have now been together for 4 years and have just bought our first house, we have agreed that it won’t be long before we start trying for a baby. Part of me wants to wait until then and if we have problems conceiving, then go back and have surgery then. But at the same time I don’t want to leave it too late! It’s such a catch 22!!!

But I have my fingers crossed things are smooth for you! Good luck ☺️ X

[endokicker1]

Hi, sorry about all the pain you are going through. All you have said sounds like endo so please accept the referral to an endo specialist. A laparoscopy is the best way to confirm. Please make sure that of they say they find endo, then they do na excision surgery (not ablation) to remove it.

Also, the bladder symptoms seem to me like you might also have something called interstitial Cystitis (or painful bladder syndrome) which is so common with many ladies with endo. It's so common that some people refer to it as the evil twin of endo.

I think you should see a pelvic therapist too. Pelvic therapy can go a long way in alleviating pain while waiting for your surgery. Also there are some foods you might need to avoid for a while. Such as high acidic foods like citrus fruits, tomatoes, chocolate, carbonated drinks, spicy foods etc.

There is so much information on Not Defined by Endo podcast and I really suggest that you search for it in Google and listen.

Please DM me if you need more information.

All the best xxx

[Liss_97 in reply to endokicker1]

Thank you for taking time to reply to me! I feel like I have got more answers by coming on here than I have from my GP/Consultant combined!!

I will take a look at the Painful Bladder Syndrome and have a look at making changes to my diet to hopefully help ease the symptoms.

Thank you again xxx

[Hidden]

Hello Liss_97

Sorry to hear what a tough you have been having. I definitely sounds like it could be endometriosis. Unfortunately, scans (internal / external ultra sound and MRI, all of which I had) do not tend to show up endo, especially 'deep endo'.

The only reliable way to get a confirmation is too have a Laparoscopy.

No surgery, should be taken lightly, although it is the only way to get the answers and be certain that it is endo causing the pain and irregularities.

Have you also looked into dietary and supplements to help?

All the best

CatPaws

[Liss_97 in reply to Hidden]

Thank you for taking time to reply to me!! I think that a Laparoscopy will be on the cards in the near future. I do think I would like to get some answers but I am worried that if nothing is found, I don’t have an explanation for the way I feel.

Luckily my Consultant has put me on an open referral so I only need to call his Secretary in order to be put on the list.

I haven’t heard about diet or supplements that help. Would you be able to explain a little more or perhaps send a link to a website with the information I will need.

Thank you once again xx

[Hidden in reply to Liss_97]

Hello

It is good that the consultant has been so on the ball. Unfortunately, laparoscopies do have a tendency to encourage endo to grow back worse than before, which is why a lot of women end up under going so many. Endo is like weeds, no sooner have you cleared the path, they seem to come back worse than before.

Oh the joys of being a woman

Endometriosis UK has some good advice and you can request information to be sent out to your home:

endometriosis.co.uk

Unhomogenised milk (the one with the cream on top) or a dairy free alternative if vegan, is the best for endometriosis.

Vitamin B Complex, one specifically with B 3 as women with endo tend to be deficient in this, Vitamin E, Zinc, Magnesium etc can all help, although I would recommend getting tested for these, to see if you are deficient, as with anything, too much of a good thing can be bad.

Milk thistle, Turmeric, Dong Quai, Ashwagandha, Evening Primrose and Gut Friendly probiotics can be beneficial and help with pain, and emotional stress.

Here is a link to some suggested foods that can help:

kendraperry.net/5-top-foods...

Link with some useful information:

wildnutrition.com/blogs/our...

* "Research that has categorized endometriosis as an auto-immune condition, has documented an improved response in those following a with a gluten-free diet; 75% of participants found a significant decrease in symptoms when following a gluten free diet over 12 months."

"Be conscious of what you put in and on your body: Bleached tampons and sanitary towels are a controversial area in the endometriosis debate. Tampons use bleached paper products that contain dioxins , proven to have an adverse effect on the hormonal system . Chemicals, such as paraben’s and phthalate’s, found in your toiletries and cosmetics have also been linked with development of endometriosis. You can find more information from the Women’s Environmental Network - wen.org.uk "

Hope this helps.

Please don't feel too overwhelmed by the above links. Take your time and read what you can, and feel free to do your own research. The above links are just a helpful starting point.

Kind regards

CatPaws

[Liss_97 in reply to Hidden]

Thank you so much for your help! I will have a look through the links and definitely at the supplements.

I forgot to mention in my original post that that I am Folic Acid deficient and when I was having periods, I was also B12 deficient. I’m obviously not sure if this is related to possibly having Endo but I guess it may be relevant.

Thanks again! Means a lot that you have taken the time to speak to me! Xx

[Hidden in reply to Liss_97]

You are welcome.

All the best.

CatPaws

[_EndoWarrior_]

I also started my period at 11 and had similar long history of painful and heavy periods. A lot has happened since age 11. I was diagnosed with Stage 4 Deep Infiltrating Endometriosis in 2018. A laparoscopy then Pelvic MRI confirmed this.

I definitely think you need to get experienced help.

See a BSGE Endometriosis Specialist at one of the BSGE centres nearest you

bsge.org.uk/centre/

or Nook Endometriosis specialist (who I’ve had recent surgery with). You can get Surgeon list by following this link:

facebook.com/groups/4181369...

Join ‘Nancy’s Nook Endometriosis Education Group’ to empower yourself with knowledge of Endometriosis.

As it’s a closed group you have to answer 3 security questions and then you have to wait a week before you can comment or like posts. This is so you can read the ‘Basic Introduction to Endometriosis Files’.

This is an Education Group not a Support/Discussion Group.

Really hope this helps. Good luck! 🙂

[Liss_97 in reply to _EndoWarrior_]

Thank you for your advice! I will take a look at the links!

Thanks again x

[StefaniaJW]

1) It is endometriosis because all symptoms are consistent with it

2) I always advise everyone to go for a definitive excision laparoscopy directly instead of undergoing a pointless diagnostic surgery (pointless because 1) it sounds like it is endo and 2) you will need an experienced endo excision surgeon to treat it effectively and 3) having a diagnostic lap just to get stitched back together and having to go back for ANOTHER months later will only make you feel worse in the meantime because more adhesions might develop after the first one)

[Liss_97 in reply to StefaniaJW]

Thank you! If I end up going down the Laparoscopy route, I will make sure this is the case! Xx

[StefaniaJW in reply to Liss_97]

Yes and please research your surgron beforehand to make sure he is well-trained and highly experienced and only performs excision and not ablation.

There are many highly skilled excision surgeons with extensive experience working within the NHS. Please PM me for names