Too young for keyhole?

[hobbitty]

Hi all, I finally spoke to gynaecology. I've been put on provera for three months and then they're going to do another ultrasound to see if anything has changed. I had two ultrasounds done a few months apart and the cysts are getting bigger. The doctor said he was reluctant to do keyhole because of my age? I'm 29? I kinda panicked in the appointment and my brain froze and I didn't ask as many questions as I should have, so I think I will be asking about that on my follow up on three months time.

[siob96]

Hi! That sounds odd to me, I’m on the waiting list for keyhole surgery to remove a cyst and I’m 26. My age has never been brought up as a factor or a reason not to get surgery. I would definitely follow up on this or get a second opinion if I was you. Hope you get everything resolved soon!

[JT1992]

I had my Endo removed via keyhole at age 30 (almost 31).. and my age was never mentioned... I wish I had done it sooner to be honest!

[Endosufferer1 in reply to JT1992]

Hi! Did you do the excision surgery? What were your symptoms? Did you have to do a second surgery? Was the surgery worth it? Where was your endo located in your body? Thank you so much for your reply!!!

[JT1992 in reply to Endosufferer1]

So I had the laparascopy as a diagnosis, but then at the same time had most of it removed. It was mostly on my ovaries, but some other areas too. And on my bladder but that would have needed specialist surgery to remove so that is staying put for now. My symptoms were very heavy periods, pain during sex (sometimes after), and extremely painful periods. I have only had the one surgery, as most of it was superficial it could be removed. If they find that the endo is deeper or attached to vital organs then they cannot remove it and you need to go back for another surgery with specialists there (e.g bowel, bladder surgeon). I only had mine in January and still having painful periods but hoping this will ease. Hope this helps

[Endosufferer1 in reply to JT1992]

Thank you very much! I don't know how in the world I'll be able to get so many surgeries done by different specialists. It's going to take two years of my life I guess (mine is everywhere, including the thoracic area). It seems more difficult than ever to get a surgery. My ribs do hurt a lot now and I feel like I need to sleep most of the day, this is crazy. I don't know how I'm going to earn a living with all of that. It's getting worse each year and I'm only 24.

[JT1992 in reply to Endosufferer1]

If you do need surgery with specialists it wouldn't be separate surgeries, they would arrange it as one. e.g if it is on your bladder then you would have surgery with the Endo surgeon and a bladder surgeon there at the same time. Sounds like you are really struggling

[Leighjen36 in reply to JT1992]

hi lovey yes that’s true I’m a stage 4 endometriosis sufferer I had 7 laparoscopy had endo for 9 years to be left for it to get so bad it was on the outside and inside my uterus fused my bowel and bladder twice on my urethra on both ovaries in my rectum and the pouch of Douglas I had cervics and uterus removed when I was 30 and ovaries out at 33 I’m still under urogyni and on the last for surgery to my bowel and bladder as I suffer so much still and also have a bowel and bladder prolapse I did a news paper article about it if you google Jenna latham have a read I feel your pain hope u get sorted x

[Endosufferer1 in reply to Leighjen36]

Hi! I've read your article, thank you very much about it! 😊 Did you ever get any issues with your appendix (endometriosis leading to an appendicitis, I mean it) and or symptoms with your lungs like pain in the ribs/chest (thorax/diaphragm/lungs)? Because if your stage is 4 and you don't have any problems with the lungs, I wonder what it means for me OMG😅.

[Endosufferer1 in reply to JT1992]

Thank you, yes I'm. It's the second small pneumothorax in two months (one because of flying by plane and the second one triggered by unexpected periods while on the pill to stop my periods). Each four months, I'll have to stop the pill at some point (otherwise, I'll be bleeding for a month nonstop). Can you imagine having a tiny pneumothorax (but you can definitely feel it) each time the periods happen with the risk of having a full collapsed lung at some point? I'm not really reassured about that (I tell you even if they don't give you any treatment for the tiny pneumothorax because the body can heal itself, you definitely are not well at all and you are very weak even after it has been healed).

[D1245]

Hi

I would definitely question this as I had my first laparoscopy at 24 and my second at 25, I got my diagnosis following my second laparoscopy. I’m in the north west so unsure if it’s different within different areas of the UK

[Endosufferer1 in reply to D1245]

Hi! How did you get two surgeries like that (I mean so close)?

[D1245 in reply to Endosufferer1]

I’ve just realised I’ve got my ages wrong! I was 23 then 25. first one I was sent private as they presumed it was cancerous at the time with my symptoms . The second was a follow up as they found no endo but suspected. I was really lucky to get it so quickly but it was because I was so unwell and quite persistent with gp and hospital. This was almost 7 and 5 years ago so I’m unsure about waiting times now as my very last surgery was for IVF in 2021 and that was done quicker due to IVF timescale.

[hobbitty]

i'm in the nw too! i think i'll trial the provera and when i get the ultrasound in 3 months definitely ask about it, thanks!

[Endowarrior1807 in reply to hobbitty]

I’m having mine in a couple of weeks and I’m 23

[Endosufferer1 in reply to Endowarrior1807]

Keep us updated! Wishing you all the best!!!!💕

[Endowarrior1807 in reply to Endosufferer1]

thanks so much! I’m honestly so scared

[Endosufferer1 in reply to Endowarrior1807]

Did you have to stop your periods prior to having your surgery?

[Endowarrior1807 in reply to Endosufferer1]

ive been on Provera 3 months back to back for a while now so I’m not due a period but I also heard it doesn’t matter if you’re on your period for the surgery

[Endosufferer1 in reply to Endowarrior1807]

They will also ask you to keep taking the pill after your surgery. Do you have any symptoms on your thoracic cage/lungs or appendix? I would be scared, too. It can take 6 hours sometimes (but you just sleep so it's OK😅) but after it takes 6 months to feel really better with no pain. For some people, it's worth it! I'd like to have a go at it, soon. You're finished with the uni (if you studied at the uni)?

[huhfimmie]

Hi, that's ridiculous I had keyhole surgery to remove endo in december 2022 when I was 17. Like other people have said, I'd really recommend going to get a second opinion. Wishing you all the best!! x

[Endosufferer1 in reply to huhfimmie]

How do you feel now? Did you do the excision surgery? I've been told that I was young and that the body could heal itself and I'm 24 with what looks like severe endometriosis!!! OMG

[huhfimmie in reply to Endosufferer1]

Yes I had the excision surgery, endo didn't come up on my ultrasound or MRI too. Now because I've had endo for a long time, I have neuropathic, chronic pain because my nerves have become hypersensitive. But now I'm going to an NHS pain clinic to help manage it and try to wean myself off medication. From what I know now managing endo is a life-long journey.

I don't get periods any more because I am on the dienogest pill (also prevents regrowth of endo - maybe do some research on it and suggest to your doctor?) so I'm feeling much better in that respect, pain isn't as debilitating and I'm not in bed 4 days a month. I only have random bad flare ups because of the neuropathic pain but its so so much more manageable now and made me feel mentally a lot better.

My surgeon told me that the body heals about 6-8 weeks post op but thats for me, and I only had stage 2 endo around bowel and bladder. Laparoscopy is also the gold standard treatment option for endo, the body definitely cannot 'heal itself' from endo without intervention. I would also really really recommend going to an endo specialist for your treatment and not just a general gynae doctor. Please let me know if you have any other questions and I'd be more than happy to help

[Endosufferer1 in reply to huhfimmie]

Thank you so much! You really are the best! How old were you when you got your periods? I started at the age of 16. The same story happened to me with the MRI. I went to a specialist just for endo last year and he also stopped my periods. But I feel like since then it got worse. Since flying by plane, I got like a tiny pneumothorax (and I bet it's the second to be honest). I've got for sure thoracic endometriosis (that would mean stage 4) but I think he didn't take me seriously (because of the MRI) or wanted to reassure me somehow or see if with just stopping my periods, it would work better??? But my life is hell, every single day, I don't know how I can make it and get frustrated that I am so slow at everything. I've heard that noni juice is excellent for endometriosis, I should check that for myself (the time I get a surgery done). Were your studies impacted by your surgery? Where did you get your surgery done?

[JOSANDY40 in reply to Endosufferer1]

Noni juice has something special about it. It doesn't taste nice. The problem with Endo is the body is completely on catchup up to fix itself therefore high level help is required for energy. More sleep, reasonable excerise, more Green veg. Higher levels of VIT C and some other VITs like D3. You to work within the remit of the illness. Dealing with the stress, burden Endo puts on us. I still find life difficult with Endo even now post menopause and a new cyst. I would consider a hysto but the Endo is so everywhere and too many operations I could risk organ and nerve damage, possibly loose bowel and bladder which seems too difficult to except. If cancer is found then I will be left with no choice.

[Endosufferer1 in reply to JOSANDY40]

Thank you very much for your reply! I was also thinking about doing a hysterectomy but there are too many side effects as I'm still in my twenties. Did the noni juice do something for you, helped you a bit?

[JOSANDY40 in reply to Endosufferer1]

Any large operations like Hysto comes with risks, possible nerve, perhaps scar pain, maybe a second operation if the sling breaks which will hold other organs in place. Also not a widely mention thing from the Surgeon is it does shorten your life a little. It does slightly shorten the length of your vagina, it does tend in the longterm age you more outwardly.

[Endosufferer1 in reply to JOSANDY40]

Thank you! I will never do that! 💕💕💕

[huhfimmie in reply to JOSANDY40]

Hi, just tried googling Noni juice and wondered if you had any studies/scientific articles to back up the benefits? I can't seem to find any online and only saw that it can maybe improve balance and flexibility, and that the high potassium levels aren't good for people with kidney problems? xx

[Endosufferer1 in reply to huhfimmie]

endo-resolved.com/noni-juic..., that's right, it's not for people with kidney, liver or heart problems.

[huhfimmie in reply to Endosufferer1]

My periods started when I was 11. I'm so sorry to hear that, it sounds really difficult. I can definitely relate that every day is a struggle for me but some are better than others which is what keeps me going. My studies have really been impacted by endo, I have my A-levels in a few weeks which is really stressful as I can't predict a flare up and have to study as hard as I can when I am feeling well because it isn't often. I find the fact that most people (teachers, some friends etc) just cannot begin to understand what its like to have endo the hardest though. That's really strange to me that a endo specialist said that?? I would definitely get a second opinion. Did you get an MRI of your chest to look for thoracic endo or just pelvic region? I also was very lucky and privileged to have gotten my surgery done at the Princess Grace Hospital in London with an endo specialist x

[Endosufferer1 in reply to huhfimmie]

Have you tried curcumine (doing a cure one month before starting your exams)? It does help a lot but don't take it while taking the juice. 😅You know what, in order for people to understand, I have sent them an email with all the single details (I mean it, even the school) and now they understand me (because I really had enough)! Because I think that most people think that endometriosis is just related to periods which is not for those with severe endometriosis (the pain is everyday and the periods can make you have a collapsed lung).

Sometimes, for some people (when the stage is low), it can work just by taking the pill and allow students to continue their studies (that's perhaps the reason the specialist had said that) but I'll definitely update you when I see him again (very soon).

I only got an MRI of the pelvic area but the MRI are not strong enough to detect anything. Nevertheless, they're making new MRI combined with ultrasound that should detect the lesions but you can wait like at least 4 years to get it in here. I'd love to get one for the thoracic area but you know how hard it is to get anything (it must be the specialist that prescribes the MRI). So, it's going to take months without being sure we'll be able to see anything (it also depends on the specialist doing the MRI and whether that person is specialised to detect the lesions for endometriosis).

That's great you were able to have access to such a great hospital! How much did it cost for you? Did you take a private insurance for that or you need to pay everything cash? (I know that if the stage is more severe, it could easily cost 20k)

[Endosufferer1 in reply to huhfimmie]

You can do it! I believe in you. Choose one uni with the highest score (one uni that you like; if it's your first choice, they can accept you even with lower grades), and a second choice with lower grades just in case.👍👏💞

Once at the uni, make sure to contact the disability team regarding endometriosis to get more easily extensions for your essays (but try not to abuse of the system but if you can't hand in on time anything, welcome in the club 😂😂😂😂😂).

[Endosufferer1 in reply to Endosufferer1]

How is it for you when you need to travel by plane? I don't want to travel by plane anymore cos each time it makes me dead for a few months with repetitive tiny pneumoraces (plural of pneumothorax) and all the rest of the usual symptoms that I have but definitely much worse.

[Pacotj]

definitely not too young, we have had patients as young as 13 for endometriosis surgery. I didnt have my surgery until this year when I was 30, 10 years since initially seeing a GP. Advocate and stand up for yourself go to your appointments prepared with what you want and keep going until they take you seriously and listen x

[Annabelannabel]

22 due surgery this year that's rubbish

[Sunflower6758]

hey hobbitty 🧡 this sounds totally bonkers! I’ve read a story recently by a specialist endometriosis centre in Romania of a girl as young as 13 having surgery as her quality of life was so dreadful (not a hysterectomy or anything just specialist surgery to remove endo) and it emphasised no one is too young for it!! It seems like doctors do all they can to put us off it but if pain is taking over your life then it’s necessary. I hate how doctors make you freeze in appointments- I can so relate- from now on I always take someone with me for back up in case this happens. Sending lots of love and hope you make some progress soon x

[Raven23]

My old doctors surgery wouldnt even consider endo at 19 even though it's a family trait. Had 2 kids, still wouldnt consider it because I had children. Changed doctors surgery and they put me in straight away and I had surgery at 26 in november. Sometimes some doctors are stuck in the past, just got to push for it or change doctors.

[JulesUK]

if you are able to I’d get another doctor, this one doesn’t seem to know what he’s taking about. Of course operations can causing adhesions which can cause their own problems problems. Is he taking about age because of pregnancy concerns? Write down your questions before you go in it’s difficult to remember on the spot. In my experience cysts will continue to grow. Mine did and I ended up in an emergency operation (after being told to go home by a doctor in A&E). I hope you get the support you need.

[Lovelyjubbley]

My daughter started with horrific endo symptoms at 13 and had a laparoscopy with excision the week after she turned 15. Sadly she is still in chronic pain and now at 16, she has a mirena coil and is having Prostap injections to put her on a temporary menopause.

[huhfimmie in reply to Lovelyjubbley]

Hi, I'm so sorry to hear that, I'm 18 now and had my laparoscopy at 17 in december '22. I still have chronic pain (it's neuropathic I think simce all endo excised). Let me know if she'd like to talk to anyone around a similar age going through the same thing - I felt really isolated being so young going through it until I joined this forum.

[Endosufferer1 in reply to Lovelyjubbley]

Does she take natural plants (noni juice, curcumine, etc.)? Did she change her diet for endo?

[ccfd9]

hi

It is worth writing the questions you have down and you can either ask them in the consultation or you could send them beforehand in an email saying that these are the questions I would like answering during the consultation

[JOSANDY40]

All these things are a shock. Yes we are stressed. Coping is difficult but you will learn to cope. It's the only way forward. I often have arguments with my Endo!. Again I strongly believe positive thinking and finding a way to achieve a party or maintain a job. Is all about how? I found some painkillers work sometimes, others sometimes. I found Antihaistmes weridy help. Gluten and Lactose free helps. Anything that takes pressure off a strained system. The TENS machine is a must for me. Set on back pain electros on sides of pelvis. Set med so brain senses, then turn down to one or two, within a few minutes the pain gates away. Your body isn't mine so you may have to play around with the settings. Never put the electros near the pain, always a blanket a distant total area. Remember, brain feels then its then turnrd down so its almost not there. The pain should start to disappear. If it doesn't you will need to learn what right for you. Gating pain with no or lower use of painkiller gives you space for bedtime when you cannot use TENS while asleep.

[Serena86]

I had keyhole myomectomy when I was 26. 29 is not young, unless you are doing hysterectomy.