Menopause and Endo

[Shuggy11]

Hi, since having a Caesarean section 24 years ago, I have suffered from painful adhesions. I had 2 laparoscopies in that time, and on both occasions no Endo was found. 4 years ago I was diagnosed with breast cancer, had a mastectomy and reconstruction, which meant more surgery on my stomach, more scarring etc. I have been in such terrible, almost unbearable pain since. I have since had 2 scans, which saw some small (3.5cm) cysts. As you can imagine, the fear I have is that I have ovarian cancer, given my history. However on my recent telephone consultation the doc told me I had Endo and that there was nothing could be done. Even though I am in such pain, he has suggested physio as a treatment. I am 52 and have not had a period in nearly 3 years. My understanding was that once I had reached menopause then I wouldn’t suffer from Endo. Any advice? I did feel very dismissed by the consultant on the phone, talking about my reconstruction op as a tummy tuck and saying he was sorry He couldn’t promise me more surgery!

[Brambledoggy]

Morning. Poor you. Going through so much, been through a lot. Physio isn’t a cure for endometriosis and it’s ridiculous of your medic to suggest so. You’re going to need some more answers from someone, somewhere and some decent second opinions. I’m 50 in February, read my profile. Still in agony most months but very occasionally get some let up during my cycle. It’s my understanding that menopause doesn’t always give us the relief we need because endo feeds off oestrogen and it can still be present in our bodies even if our periods cease. I’ll try and send you an article. Also on the right hand side of this page, others are asking similar questions. I do know from many various ops including an ectopic pregnancy that scar tissue from surgeries can also be excruciating, just adding another layer of pain on top of the endometriosis lesions. I’ve been fighting pain and symptoms for over 30 years and was really hopeful of some relief as I get into my fifties. If anyone else is reading and can help us, I’d be interested to hear their experiences of relief after 50.

[Brambledoggy]

In endometriosis, cells similar to the lining of the uterus grows in other places, like it does inside the uterus the tissue builds up and sheds each month. However, the tissue outside the uterus is unable to exit through the vagina and gets trapped in the body leading to the formation of scar tissue, inflammation, and pain.

Estrogen stimulates the growth of endometriosis lesions, so it seems logical that after menopause, endometriosis becomes less active as your ovaries produce less estrogen. However, as the body still makes some estrogen, it means that endo symptoms can continue even in menopause.

Can endometriosis develop after menopause?

Endometriosis can also develop after menopause but it is rare and could be associated with the use of:

Hormone replacement therapy (HRT)

Phytoestrogens (plant-based estrogens that mimic estrogen)

Tamoxifen (a selective estrogen receptor modulator often used to treat breast cancer)

However, it is unclear whether the growth of lesions is independent to estrogen, or if there is a sensitivity to estrogen, or production of estrogen, comes from the lesion itself.

It should be noted there is limited data on the effects of hormone therapy and endometriosis. It is believed that even after surgery involving a total hysterectomy, estrogen therapy was found to initiate endometriosis symptoms. Additionally estrogen therapy increases the risk of cancer, whereas other types of hormone therapy may not cause symptoms post-surgery.

Another theory is that genetic changes or epigenetics are involved the development of endometriosis in menopause, which means there is a modification of the way genes are expressed. A case study of several postmenopausal women identified that all cases of endometriosis lesions were either ovarian cysts or deep infiltrating endometriosis, which is where lesions are found in other places such as the bowel and bladder.

It’s believed that the lesions in cystic and deep infiltrating endometriosis have an ability to grow despite the lower levels of estrogen that occur after menopause, and instead start to proliferate because of genetic or epigenetic events.

Treatments of endometriosis post-menopause

Treatments of endometriosis in menopause is primarily surgical. The use of GnRH analogues or agonists (such as Lupron, Synarel, Depot, or Zoladex) are not effective post menopause.

The bottom line

Symptoms of endometriosis after menopause are not common, but it can happen. Endometriosis can also develop after menopause, but it is rare.

It is not known why endometriosis could develop after menopause, but some factors include increased circulation of estrogens (taken through synthetic hormones or from foods high in phytoestrogens), a change in sensitivity to estrogen, or increased localized production of estrogen. In cases where symptoms commence abruptly after menopause, it is thought that a genetic or epigenetic change may have occurred.

[Shuggy11 in reply to Brambledoggy]

Thank you for such a thorough answer!

[Starfish123]

Could you ask your gp for a ‘piece of mind scan’, this is what I was told to ask for after I’d had a few scans that stayed the same with cysts. The dr did organise this for me and it was found at that scan that the largest cyst had grown. Given my age I had a blood test ca125 which was just above the normal scale, my previous one was very low so I was fast tracked to see a gynaecologist. They needed my previous scans which weren’t available on their system and it took a few weeks for them to be passed across. Once that happened I had a phone call one evening with a ct scan booked the following day, an appointment with a oncology gynaecologist a few days later and surgery 2 weeks later. Mine wasn’t ovarian cancer but that is what they were looking for, they found endo, a lot was cut away but some couldn’t be as it involved the bowel.

My point is if I hadn’t had the piece of mind scan I would still be suffering the constant pain on the left side. It could also help with your current state of mind as you must be very worried especially when the consultant isn’t taking your concerns seriously enough. You could ask for a referral to another consultant but ask for someone in another hospital trust, that way it’s easier to get a different opinion from what I’ve been told.

I hope it helps

[Shuggy11 in reply to Starfish123]

Thank you. I will call my doctors surgery tomorrow but even trying to get past the receptionist during the lockdown is stressful, can’t give up tho.

[Helenval]

Hi Shuggy11Hello from Australia I’ve just read this article from Endometriosis Australia and thought you might find in of interest. Hope it helps.

Btw I’ve had everything removed at 40 and still in pain at 60.

Regards

Helen

Endometriosis and hysterectomy

Have you decided to have a hysterectomy in the hope that it will alleviate your endometriosis-related symptoms? Then do take a moment to consider all of your options and the irreversible consequences.

Hysterectomy (surgical removal of the uterus) does not guarantee relief from endometriosis-related symptoms and can neither be classified as a “treatment“, nor as a “cure” for endometriosis [1-3].

Furthermore, surgery is surgeon dependent, and if all the endometriosis is not removed as at the same time as the removal of your uterus and/or your ovaries — you may still have endometriosis (and associated symptoms) after this irreversible procedure [4,5].

Let’s consider what endometriosis is: a disease where tissue similar to the lining of the uterus (known as the endometrium) is found outside of the uterus. This often means that the uterus itself is a normal and healthy organ and, in fact, removing that normal and healthy organ may have little impact on your pain if other causes for your symptoms are not addressed at the same time.

There are situations where the uterus may also be affected by secondary causes for your pain; for example, by adenomyosis (where cells similar to the endometrium are embedded into the muscular layers of the uterus), and this condition is likely improved by hysterectomy.

For women with endometriosis, who have severe period pain or heavy menstrual bleeding, hysterectomy may offer improvement or resolution of these symptoms. This must be balanced with the invasiveness and permanence of the procedure and for some women with endometriosis, who have a hysterectomy, there is no change in their pain symptoms after the procedure.

Definition of hysterectomy

The surgical removal of uterus through the abdominal wall or vagina. There are two types of hysterectomies: total and sub-total:

Total hysterectomy

The uterus is removed, including the fundus (body of the uterus) and the cervix.

Sub-total hysterectomy

The uterus is removed but the cervix is left intact.

When other pelvic organs are removed at the time of hysterectomy these terms apply:

Oophorectomy (or ovariectomy)

Removal of an ovary. When both ovaries are removed, the surgical procedure is called “bilateral oophorectomy,” whereas the removal of only one ovary is called “unilateral oopherectomy.” When both ovaries are removed, a woman will experience instant and irreversible menopause.

Salpingo-oophorectomy

Removal of Fallopian tube and ovary. “Bilateral salpingo-oophorectomy” (BSO) is the removal of both tubes and both ovaries.

Methods of hysterectomy

Hysterectomies are performed three different ways in various combinations:

abdominally

vaginally

laparoscopically

If you are considering hysterectomy, discuss the best approach with your surgeon. As is true with any type of surgery, make sure the doctor you choose has considerable experience performing whatever method you choose and that s/he knows to remove all endometriosis at the same time.

TAH – total abdominal hysterectomy

A vertical or horizontal skin incision is made on the lower abdominal wall, and the uterus and cervix are removed through the incision (with or without the Fallopian tubes and ovaries). Recovery time is usually longer than with the other methods. Endometriosis should be removed at the time of a TAH.

VH – vaginal hysterectomy

The skin around the cervix at the top of the vagina is opened and the uterus and cervix (with or without the Fallopian tubes and ovaries) are removed through this opening. There are no abdominal incisions, therefore there is generally a shorter recovery time. It is important to note that a vaginal hysterectomy may not allow adequate vision to remove any or all endometriosis at the time of the hysterectomy.

Laparoscopic hysterectomy

When a telescope is placed into the abdomen to avoid a larger skin incision, this is called a laparoscopic hysterectomy and there are three variations. It is generally preferred to an abdominal hysterectomy where possible since the recovery time is shorter for the woman. It is important to note that endometriosis may be readily removed with all three variants:

TLH – total laparoscopic hysterectomy

The entire procedure is performed laparoscopically with removal of the uterus and cervix and closure of the vaginal tissues with the guidance of the laparoscope from the abdominal side.

LAVH – laparoscopically-assisted vaginal hysterectomy

The upper part of the hysterectomy is performed with guidance from the laparoscope and the surgery is finished vaginally with closure of the vaginal tissues from the vaginal side.

STLH – subtotal laparoscopic hysterectomy (supracervical)

This is a sub-total hysterectomy (cervix is retained) performed with the guidance of the laparoscope.

Long-term effects of hysterectomy

There can be disadvantages to having a hysterectomy in relation to longer term health outcomes and clearer information on this has started to emerge – especially for those who have a hysterectomy prior to natural menopause.

For example, a large cohort study has showed that women with endometriosis, who had a hysterectomy before the age of 40, had a higher risk of developing coronary heart disease [6].

Another recent study tracking women (with or without endometriosis) who had a hysterectomy (with preservation of the ovaries) before the age of 35 showed they had a more than four-fold increase in risk of congestive heart failure and a 2.5-fold greater risk of coronary heart disease. Furthermore, these women had a 13% increased risk of higher blood pressure, and an 18% higher risk for obesity [7].

Two studies have suggested a significantly increased risk of dementia after surgical removal of the ovaries before the onset of natural menopause – the risk increasing with the younger age at the time of removal of the ovaries [8].

We’ve a lot to learn on the role that our uterus and ovaries (and the hormones and enzymes within them) play in terms of interacting with other vital organs and their consequent contribution to our overall long-term health — but the message perhaps is: don’t make hasty decisions about (healthy) organ removals…

The hysterectomy decision

Deciding whether to have a hysterectomy is a very weighty, and personal decision. If you’ve been advised by your doctor to have a hysterectomy, a second opinion is always in order.

Deciding whether to have a hysterectomy is a very important and highly personal decision.

Discuss all the risks and possible side effects with your doctor

Read books, articles, and personal stories about hysterectomy – especially first-hand experiences of women with endometriosis.

As previously mentioned, it is important to understand that some women experience a persistence of endometriosis and/or its symptoms after hysterectomy, even if all the endometriosis was removed at the time of the procedure.

And finally, consider your decision very carefully because “the hysterectomy decision” is not reversible.

Then make up your own mind.

Acknowledgment

This article is based on the original article on hysterectomy for endometriosis, written by Ellen T Johnson in 2005 and has been updated by the following co-authors:

Jason Abbott PhD FRANZCOG FRCOG B Med (Hons), Professor at UNSW, Sydney, Australia, Medical Director of Endometriosis Australia, and President of the Australasian Gynaecological Endoscopy and Surgery Society (AGES)

Heather Guidone, Associate Editor of Endometriosis.org, and Trustee of the Endometriosis Research Centre, USA

Andrew Horne PhD FRCOG, Professor of Gynaecology and Reproductive Sciences at Edinburgh University, UK, and Medical Advisor to Endometriosis UK.

Lone Hummelshoj, Publisher/Editor-in-Chief of Endometriosis.org

Neil Johnson MD CREI FRANZCOG FRCOG MRCGP, Professor of Reproductive Health and Gynaecologist, Auckland, New Zealand, and President of the World Endometriosis Society (WES)

References

Johnson NP, et al. Consensus on current management of endometriosis. Hum Reprod 2013;28(6):1552-68.

Dunselman GA, et al. ESHRE guideline: management of women with endometriosis. Hum Reprod 2014;29(3):400-12.

Endometriosis: diagnosis and management. NICE Guideline NG73, September 2017

Berlanda N, et al. The outcomes of repeat surgery for recurrent symptomatic endometriosis. Curr Opin Obstet Gynecol 2010;22(4):320-25.

Selçuk İ and Bozdag G. Recurrence of endometriosis; risk factors, mechanisms and biomarkers; review of the literature. Journal of the Turkish German Gynecological Association 2013;14(2):98-103.

Mu F, et al. Endometriosis and risk of coronary heart disease. Circ Cardiovasc Qual Outcomes 2016 Epub.

Laughlin-Tommaso SK, et al. Cardiovascular and metabolic morbidity after hysterectomy with ovarian conservation: a cohort study. Menopause 2018 [epub ahead of print]

Rocca WA, et al. Hysterectomy, oophorectomy, estrogen, and the risk of dementia. Neurodegener Dis 2012;10:175-78

See also

Facebook support forum for women with endometriosis

The UNhysterectomy

Hystersisters (support group for women, who have had a hysterectomy)