Just after some advice as it sounds like a lot of you have been through the same thing
Went to GP with period pain, had an ultrasound and blood test. Got sent to the gynaecologist and I have a 5.5 cm endometrioma on my right ovary and a raised ca 125.
Been googling and think that means I probably have endometriosis?
Anyway, the gynaecologist said he will scan me again in 6 weeks (now 3 weeks) and if it’s no smaller then they will remove it because they need to rule of malignancy,
Basically I am really reluctant to have surgery, and don’t know if it is really necessary?
I’ve been looking and apparently it’s very unlikely to be malignant and the surgery can do as much harm as good to fertility?
Also, totally getting ahead of myself, I’m 24, and really want children, but I want a few years just me and my soon-to-be husband. Will waiting for children till I’m around 28 make it harder if I have got endometriosis?
Also whenever I poo on my period it’s so painful and I’m often sick at the same time! “Lady problems” eh.
Thank you for reading my tale of woe!
xoxo
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Strawberry_jam
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Hi, I'm not sure about the endometrioma as I haven't experienced one. However, I also have really painful bowel movements on my period and I've just had a diagnostic laparoscopy where they found bowel endometriosis- it could be that you have endo and it's spread. I'd mention it at your next appointment, then if you decide to have surgery they may also be able to examine your bowel at the same time to check. X
I have stage 4 endometriosis of which endometriomas (cysts) are a part of - scans revealed that I had a number of cysts including one that was 5.4cm. Four months after my initial pain began (April 2017), my periods became irregular, and were so until I had an investigative laparoscopy (key hole surgery). I too was reluctant to have to have surgery, as as you said, there's a risk that it can do as much harm as good, and I was warned of the worse case outcome being a hysterectomy, but I went ahead in March 2018 and one of the cysts burst and they slashed some adhesions between my ovaries and uterus.
I continue to live with cysts and currently have 3 of varying sizes (2.7cm, 2.9cm and 3.5cm). I have been flagged for further surgery due to the cysts of which they believe one is pressing on and narrowing my bowel. They also think from a previous scan that I have an endometrial plaque almost 3cm in length on my bowel. Every appointment I have they ask about my bowel movements, so if you are suffering in that area, they could be linked.
Since my keyhole in March 2018, my periods have returned to normal (albeit very heavy). I too would like children at some point in the future, and have read several stories of endometriosis affecting fertility, but equally know many people personally who have endometriosis that have conceived (including one who has had previously has surgery to remove endometriosis). Obviously each decision is individual, but for me I would rather risk future surgery in hope to prevent endometriosis causing further damage to my reproductive organs and thus, hopefully enable me to have children in the future, than let the endometriosis continue to build.
I would very highly suggest you get a second opinion.
Very skilled endo specialist g6nis would never leave cysts or endo in place. It is the the cause if your pain, and causes infertility issues. By leaving them in place, they feed of estrogen in your body and multiply. They can be tiny cells which then split off and stick to organs all over your body and reproduce.
The only true course of action according to my specialist is surgery to remove all endo that can be found, and then placing you on a hormone suppressant such as contraceptive pill or mirena coil to keep your estrogen reduced and prevent any microscopic cells left from reproducing. Or allowing you try for children.
From people I have spoken to, the surgeons reluctant to touch it are not endometreosis specialists. If they pop the cyst it will spread all over your pelvis and be exceptionally hard to remove every cell. A specialist wouldnt make that kind of mistake.
I'm not going to lie, I ended up going privately for my treatment as the nhs took so long as has si few true specialists to even go to. It was £4700 each surgery and sadly I had rapid regrowth so it kept returning. Contraceptives and a low inflammation diet helped for a time but my consultant warned me if I want another child it was now or never because the next step to rid me of pain would cause permanent damage to my womb, or hormonal drugs making future fertility unlikely. I had my 3td little boy soon after.
If you leave this disease in your body, there is the potential for it to spread and stick organs together, even fuse bone together. If you want children in the future from what ive ecoerience, been told and from women that I've met that have had the same, surgery to remove is absolutely necessary.
There are women that live with th disease for years and manage the pain. For me the pain was to severe to walk some days never mind work and look after my children so it's always a very unique individual decision. I would just hate for you to leave it too late and find it's got into other organs like your bowel. Theres no removing it from some organs, for example with the bowel if it gets inside they will often have to remove parts of your bowel to remove the endo. That terrified me even more to be honest.
Please visit some American signs on endometeosis. They have a lot more information than anything we have here and very much treat the condition much more aggressively so that women can get on with their lives. Here I've been offered basically to be signed off sick while I wait 18months for surgery, going to a&e in pain.
5here us hope, i wish you every success going forward xxxx
Just thought I’d drop in and share my experience too...I had a diagnostic laparoscopy in December last year. They found stage 3/4 endo and removed what they could but I had a lot on my bowel which they couldn’t remove without a specialist...I feel your toilet problems!
I had a follow up in March to which we decided the baby route was most important. I’ve always wanted kids and now I’m 29 with pretty bad endo they recommended IVF. My pain and symptoms are getting worse again so I asked about more surgery before IVF and they’ve recommended I don’t because of the risks it could have to my fertility... but if IVF doesn’t work then I will be pushing for the additional surgery and do what I can to get myself better whether it affects my fertility or not. I can’t accept this pain for the rest of my life.
On the other hand, my sister has endo too. She had a diagnostic laparoscopy and a couple of years later when she was ready, had a baby after trying for just a few months so 😊 everyone is different.
Hi there! It does sound like Endometriosis, but please don't be scared, you are not alone. I found myself in a similar position as yourself wondering about surgery. However I'm over 30 and have been trying for a baby for 5 months now (started before knowing I had endo). I have cysts in both ovaries, one is 7cm, so rather big. If you decide on surgery do that with an endo and reproductive specialist. The surgery always removes some healthy ovarian tissue that's why they say it may affect fertility. But so does endo, especially when you don't know how big the damage is (they can only see the cysts but it could have spread further, obstruct your tubes, etc). I have read about soooo many cases if women undergoing surgery and then having babies (some even with just one ovary!!) But still don't dare to do it. I've seen multiple endo specialists and they all say they won't operate just yet and my priority should be to get pregnant. In any case if you have the surgery now a good idea would be to freeze some eggs as a backup plan. Again, you are so young I'm positive you will be fine. Good luck!!
I second what most people are saying here; have your doctor refer you to a know an Endometriosis Centre bsge.org.uk/centre/. Don’t have any surgery before this. They will be the best to advise you on next course of action. I went to one in London and they really know the condition inside out.
So I was in a similar position 8 years ago when I got diagnosed with endo (chocolate cyst) on my ovary that was 5.5cm. I was told they don’t operate until is past 6 because there is a chance it will go away on its own. Once they established it was growing, they said they would operate. I wasn’t at that stage told or advised anything about endo.
I’ll be honest, I had so many issues with the nhs, I decided to research private recommenced surgeons and found one not so far away in Kent. I saw him and it just so happened he was an endo specialist. He looked at my symptoms and scan and advised not only that the nhs had got it wrong as the cyst was inside my ovary (now 7) but that he also thought I had endo.
We agreed that he would operate to remove the cyst, and if there was endo, he would burn that off at the same time. After a 4.5 hour operation, it was established I had severe endo over my bowels , bladder and pelvis. Whilst under, he was also able to check all my tubes etc to check I would be okay to conceive. It was said that if I did want a child, the best time was after the first surgery as the more ops, the more scar tissue and therefore less chance.
Eight years on, I’m back and things have changed as I think there are more specialist depts in nhs hospitals dealing with endo. My recommendation is to get referred. I would say to go with the op now as if you opt out, the endo May get worse and you’ll be back on waiting list for a year to get seen.
Anyway, good luck and hope it all works out. I feel your endo pain! Esp the bowel thing...no one could understand!!! X
Similar comments to those above but an additional recommendation.
In January I was found to have stage 3/4 endo including chocolate cysts on both ovaries and bowel (I empathize with the pain when going to the toilet). I went in for surgery straight away as the pain was unbearable.
I would recommend getting an AMH blood test to see how your fertility levels are (not 100% accurate but a good indicator). I would then recommend freezing eggs while still young, if at all possible. At 34 I am now too late as the endo has destroyed my eggs and I am now awaiting donor egg IVF. I really wish that I had known earlier and frozen some eggs, just in case. When the pain reaches a certain level, there is no avoiding surgery, but at least you could do it with the knowledge that you have some eggs banked.
Hi, I have cysts on my ovaries. One on my left is 2cm and has been stable for over a year now, no changes.. and one on my right which is nearly 3cm, I’ve had cysts that come and go and I’m so unsure on surgery, and cannot make my mind up... I gave factors of my husbands sperm too, but my doctor has suggested if I still haven’t fell pregnant within a year to go ahead with the surgery. I’m also 24, already been trying 2 years hoping for a miracle. Good luck x
I always had very heavy bleeding periods, with severe pain. After having 2 children my periods got much worse. Hence, severe endometriosis, with rectal bleeding which I still have at: 64 years old. I had to have a hysterectomy at 28 years old, but my ovaries were left because of my young age. I had my cervix lasered, as I could not have another period because it was too painful to pass. I advise anyone to pursue their case otherwise they will suffer all of their lives with endo pain. I have spent all of my life with problems even after having a hysterectomy. I am unable to deal with my rectal bleeding, which I have every day because the lining of my bowel is very thin, plus I have a rectal ulcer which does not help my problem. Don't suffer in silence with endo.
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