Early Stages.....: Hello :) I have just... - Endometriosis UK

Endometriosis UK

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Early Stages.....

DiscoSloth
DiscoSloth

Hello :)

I have just been diagnosed with what they believe to be early stages of Endometriosis and the doctors have just left it at that.

She hasn't given me any advise on how to help it or how to prevent it from getting any worse and I feel a bit left in the dark with the condition; and I didn't know where else to turn. She told me once the pain becomes worse and everyday then we can talk and investigate further......

My husband and I were hoping to start trying for a baby at the end of this year but with this diagnosis, I don't know if leaving it till then will lower my chances of getting pregnant (in turn allowing the Endometriosis to get worse) or do I start now?

We would rather wait but if it meant losing the chance then we would probably decide to start now.

Does anyone have any advice for this specific situation? How worried should I be with the diagnostic of "early stages"?

Also if anyone knows of anything that can help prevent it from becoming worse or help with any of its effects pain, night sweats, emotions that would be greatly appreciated :)

Thanks,

11 Replies

Sorry to hear that. That diagnosis is very much confusing!! I don’t have experience With that I’m afraid but I’ve been suspected endo for many many years now and had a happy healthy pregnancy and very easy delivery ( think con traction’s are much nicer then endo pains!) also while pregnant I had no endo pains At all! However that being said these are questions you should ask go or gynae as to when your body will be best to conceive and carry! With endo without treatment it just progressively grows but that doesn’t mean your unable to conceive as there’s so many endo babies out there !! You know your body you try when you feel is right

DiscoSloth
DiscoSloth in reply to Adeno2020

It’s very confusing indeed. I don’t think my gynaecologist has really taken any interest in it and has just left me with more questions than answers. Thank you 😊

Adeno2020
Adeno2020 in reply to DiscoSloth

Yeah defo seems that way how did they find the early stages did you have a laparoscopy?

DiscoSloth
DiscoSloth in reply to Adeno2020

No an internal ultrasound and they just left it at that

Adeno2020
Adeno2020 in reply to DiscoSloth

To my knowledge only a laparoscopy can give you an actual diagnosis

Hey,

It's awful when we get left in the dark with our health.

Did you have a diagnostic laparoscopy? If so the surgeon should send a letter to your GP, which you can request. There should be notes on there about extent of the endo, locations and plans for the future.

Endo is a condition which can either stay the same or get worse, where unfortunately the severity of symptoms isn't related to the amount of endo so it's difficult to know what's going on without actually looking inside. A diagnostic lap is the only way to confirm endo.

Things to consider based on my experience so far on the TTC path;

Endo can affect the ovaries and tubes, also the inside of the uterus so it would be worth in the near future pushing for a lap to look at your ovaries, tubes and hysteroscopy to check your uterus.

Endo can get worse during pregnancy or straight after so often the best course of action to excise the endo first; conception is shown to be highest the first year after excision surgery. This is because less endo means more chance you'll ovulate, have normal regular cycles, your uterus will accept implantation, your uterus will be able to expand unhindered and you won't need surgery with a young child.

Weigh up the pros and cons of TTC right now for you both personally; we can all give advice but because it's a personal decision it needs both of you. Also consider what's more important your health or a baby; this is the driving factor for my hubby, he wants me to be healthy first, everything else will fall into place, if it doesn't then at least we're not making me ill by trying.

You shouldn't feel pressured by any outside factors to TTC earlier. Take your time, to consider all options. Read up on Endo, get some books. Look into associated conditions; I didn't know that thyroid hormone levels affect fertility and most women with endo have low thyroid levels. Vitamin D plays a key role in fertility, so that may need supplementation.

Consider with endo that some women easily become pregnant, others not, or may need additional help. We're all different, so it's important to talk with your husband about your expectations and managing each month, set coping strategies in place to cope with both positives and negatives. As my husband says "always remember to enjoy the process" lol!!

Also bear in mind Covid vaccinations - the NHS and Gov guidelines say anyone planning can take them, but if you are pregnant you cannot. However when you go to the NHS site and click the links to read each of the vaccination brands documentation it says there are no trials or studies on women planning to conceive, and that based on how TTC women react on other similar vaccinations it's safe, but you must consult your GP or healthcare professional based on there being no evidence on it's affects. The original documentation in December 2020 clearly said that women shouldn't be planning for two months after their first dose, and should delay their second until after pregnancy. It's only been changed in January 2021 based on how many have been vaccinated. So it's personal preference on how that works with each persons planning. We've gone with the idea that at any time you could be pregnant; realistically if TTC there's only about a two week window where you may not be and that's after your period.

The best way of preventing your endo from becoming worse if you don't want the surgical route to excise your endo, or not ready for surgery yet would be hormones, these would only slow the endo growth. They will not stop it though, for some women even just having no symptoms for a while lets them get on with their life for a bit. For most women this is ideal as it gives them time to decide on what they'd like to do regarding planning and future surgery, or just stay on hormones if the endo symptoms are reduced. I'm not suggesting hormones long term but that could be something you could consider for a few months until you've researched and decided what you'd both like to do.

A final note; be careful about the response you get from your specialist when asking about pregnancy. If there general gynae chances are they'll say get pregnant soon as they don't know that much about endo so think stopping periods will "cure" it. If it's a gynae with an interest in endo or endo specialist chances are you'll get much more info about pros and cons relating to your situation.

Wow that's long, apologies.

I'm hoping whenever and whatever you do regarding TTC, that everything goes smoothly :)

Hope it helps though xx

DiscoSloth
DiscoSloth in reply to luthien

No please don’t be sorry! The more information the better 😊 I’m very green with this and this has giving me things to look into.

Thank you so much x

'They believe to be'. What have they diagnosed you from, USS, MRI, or just symptoms?

DiscoSloth
DiscoSloth in reply to Spireite

I had an internal ultrasound and they found it then as well as the symptoms. They found a liaison but it was mm in length. This is all I have been told, then I was transferred to a gynaecologist, who felt around and said it couldn’t be bad as my womb was still flexible that was it. I asked if she could help me further and tell me how to prevent it from getting worst and she said if the pain gets worst and everyday then they will investigate further.

Spireite
Spireite in reply to DiscoSloth

Leaving you with far more questions than anwers!

They really can't make that judgement from a USS and an internal, pain levels aren't an accurate barometer of severity either.

Have you got another appointment with your gynae, or has it been left open that you get referred back when you are in more pain?

If you have another appointment, I'd get a list of specific questions ready, and ask for timescales around how long you should be TTC before they investigate properly. If you are only going to get referred back when you are in more pain, I'd be asking your GP for a second opinion to someone with a special interest in endo and fertility.

If it helps, not every woman with endo struggles to conceive when they try. It might not be an axe about to fall on your fertility if you delay TTC by a few months. However, you do deserve a proper diagnosis, your current pain levels and symptoms to be taken seriously, and to know what your next steps will be if you do struggle to conceive.

My understanding is that to prevent it getting worse you need to balance your hormones. Conventional medicine is generally concerned with cures rather than prevention hence you rarely get much advice in this area! But definitely try the endo diet, there are several books available which others have recommended on this forum if you do a search of past posts. Also an endo diet podcast from "the doctors kitchen" which I haven't listened to yet but planning to later this week (I also secretly love Dr Rupy 🧡)

I know several women who started coldwater therapy (open water swimming) during lockdown- yikes- it's not for everyone!! But they have had some excellent results with hormonal issues so maybe something worth reading more about. Mention it to the GP and they will probably look at you like youre mad! I am trying the Wim Hof method (switching the shower to cold for 1 min every morning) and although my pain was mild to start with I would say its reduced by about 50%. Maybe just coincidence but it's free and I'm willing to try anything! Note the cautions if you do fall pregnant though, or have any other medical conditions.

Good luck, let us know how things progress over the coming months x

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